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Slow Progress is Still Progress—His Timing, Not Mine

Often I have to remind myself that things don’t happen on my timeline. I’m a self-proclaimed recovering control freak. I’m reminded over and over again that things don’t always go according to my plans, but it’s still a lesson I have to keep learning.

If you would have asked me as a recent high school graduate what my future would look like, I might have told you about how I’d meet the man of my dreams during my college years, graduate and land a high-paying job, and get married and start a family shortly thereafter. As I progressed through college and into my early working years, and my plans weren’t exactly being realized, I started to despise the question, “where do you see yourself in 5 years?” I could never quite put my finger on it, because I definitely see the value in envisioning the future and making goals. But if I was answering that question honestly, I would have to say “I have no idea!”

Although I was introduced to my dreamboat in college, we didn’t develop feelings until years later. I spent plenty of time during those years feeling lonely, confused and rejected. Little did I know that progressing slowly from a long-term friendship to a relationship was the perfect way to find my perfect match. I always found meaning in the work I did, but I was by no means climbing the corporate ladder. Who knew that the progression of my career was the perfect path to being a stay-at-home mom, something that ambitious high school graduate had no idea I even wanted.

So, looking back on how things have fallen into place, I’m reminded that my plans don’t always work out on my timeline and that’s a very good thing. Along with my misconceptions of exactly how my future would unfold, I also had some specific plans for raising kids. I used to think that when I had children, I would make them smart. I would read to them and work with them, and because of the things I did, my kids would thrive. I could put in enough time, dedication and love and of course they would turn out exactly how I planned. Gosh, I was clueless.

My experience raising kids is not at all what I thought it would be like. I couldn’t have imagined the depth of joy or the sting of heartache that comes along with being a mom. Every parent wants to make things the best they can for their kids, to give them every opportunity for success. But so much of it is outside of our control. Having Gage as my first-born son has taught me so much about life and love, and just how much is out of my control. Another lesson Gage has taught me is to let him take the lead, rather than clinging to my own expectations.

Gage has made a ton of progress since the day we came home from the hospital with a tiny 5 pound baby boy. Before kids I expected to check off milestones like first word, first steps, learning colors, numbers and more. gage eats While Gage’s progress is much different than those typical milestones, it’s still a very big deal. Gage has been going to feeding therapy for about a month now. The instructor working with us acknowledged that things they are working towards can seem like very slow progress. And she’s right. It feels…so…slow. But no matter how slow, Gage is making progress. I need to stay focused on that instead of thinking about unmet expectations. That’s not always easy for a recovering control freak like myself.

Yesterday in therapy, Gage moved his hand to his mouth to bite off a tiny bit of strawberry that was stuck to his finger. I know how small that may seem, but in some ways, it feels huge. Gage will do things, or he won’t, in his own time. It’s hard to say what his future will look like. But if I’ve learned anything in the past 3 years it’s that what he’s able to accomplish is out of my control. His achievements are exactly that…his. They’re not a result of things I’ve done or how hard I’ve tried. Of course I want to do my best for Gage, but maybe the best I can do is celebrate and appreciate each bit of progress, no matter how slow, and love him just the way he is.

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Comparison – The Thief of Joy

The quote “comparison is the thief of joy” has always resonated with me, but even more so since becoming a special needs parent. Some of my lowest points are when I give in to the temptation to compare our lives and Gage’s abilities with other families and kids. So I try to avoid that. Sometimes it’s easier than others. Luckily, one thing that hasn’t stolen any of my joy is having another child.

When I was pregnant with Caleb, I worried that it would be hard to watch him develop at a typical pace, and surpass Gage’s skill level. But that hasn’t been the case at all. Each one of Caleb’s accomplishments is celebrated and truly makes me happy, nothing else. It’s been amazing to watch him learn and grow. But one of the most amazing things to watch is the way Caleb interacts with his big brother.

brotherly love

These boys already have an incredible bond. Both their faces light up when they see the other one. Lately, Caleb has been into giving “kisses” or at least his version of them. He will lean in to give Gage a smooch, then just giggle and giggle. Gage eats it up. Of course, it’s not always sunshine and rainbows. Sometimes Caleb leans in for a kiss, then proceeds to smack Gage in the face or grab a fistful of his hair. There are moments of jealousy, when Gage is in my lap and Caleb wants to be, or when Caleb has my full attention and Gage protests.

I still have my own moments of jealousy too. Although it’s been easy for me to keep from comparing my kids to each other, it’s harder to for me not to compare my life to other parents. Maybe jealousy is the wrong word and self-pity is a more accurate description. It’s not like I sit around wishing that I had someone else’s life. I love our little family just the way we are. I know without the struggles and experiences we’ve had, I wouldn’t be the person I am today. Whether it’s self-pity, jealousy or something else, comparing my life to others definitely has the potential to steal my joy if I let it.

This morning was a perfect example of that. Evan and I were sitting in the hospital, waiting for Gage to get through his Dysport procedure. I reflected on some different treatment options we had just discussed with his neurologist, overwhelmed by what seems like such drastic measures. I complained to Evan that most parents don’t have to make decisions about whether or not their kids should have surgery to sever nerves in their spinal cord. As the words came out of my mouth, the tears welled up in my eyes. At that very moment, the doctor and nurse returned to let us know they were finished and Gage did great. That good news was enough to stop my tears in their tracks and bring a smile to my face instead. I’m so glad that my pity party was cut short. Rather than comparing the decisions we have to make with those of other parents, we just need to focus on Gage. All we can do is try to make the best choices we can for him. To care for him and love him the best way we know how. After all, isn’t that what all parents try to do for their children?

Gage’s life will look much different than most kids. His experience and development won’t look like his little brother’s. And that’s ok. I can still find so much joy in celebrating each of their accomplishments, even though they are drastically different. My experience as their mom won’t be typical either. Hopefully I’ll avoid the trap of comparison to other parents and focus on joy instead.

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God’s Will vs My Will

I’m honored to share this guest post from my dear friend Jessie. She and I have known each other since college and grown closer over the years, especially since becoming moms on the exact same day! She is one of the kindest and most caring people I’ve ever met and the love of Jesus shines through her. With her permission, I wanted to share not only this post, but also a link to her blog about her journey with infertility. I hope you’ll feel as blessed by her words as I do. 

I have recently been thinking about God’s Will for our lives versus the will we have for our own lives.  It’s easy to say the words “Thy Will be done” but do we really mean it?  Do we really want God’s Will to be done in our lives when we think we know best? Life is full of sadness and grief and loneliness and many other negative feelings.  Do we really want our lives to rest in the hands of someone other than ourselves?   Someone who might make us go through that stuff?  I think the answer can be yes.  If we can recognize that this someone isn’t just anyone, but God.  The God who created the universe but also knows the number of hairs on each head.  The God who invented laughter and love.  The God who is the same yesterday, today, and tomorrow.  The God who built us and knows us better than we know ourselves.  The God who can use what Satan intends for our destruction, for His glory and for our blessing.  So do we dare lay our lives in God’s hands for His Will to be done?

Jessie: It was not my will to go through years of infertility and then the struggles of adoption.  I could say it was God’s Will for me to go through those difficult times, but really He allowed me to go through those times so that His Will could be done.  It was God’s Will for me to learn patience, to learn that I am not in control, and to be a parent of a child who needed a safe and loving home.  It was God’s Will to change my heart about the way I see children and to change even my purpose in life.  God chose me to be the mother to this amazing child who I get to call my own.  God’s Will has not only given me a blessing beyond words and smiles and tears, but has also given me an avenue to talk about my faith in a new way with renewed passion.

Hannah: It was not necessarily her will to have a child with special needs and then face each day with new challenges, fears, and even frustrations.  Hannah didn’t just have a child with special needs.  She had Gage.  Gage who is called Beloved by his Heavenly Father.  Gage whose heart has been molded and whose lungs have been breathed into by God Himself.  Gage whom God purposely placed in the arms of two amazing earthly parents.  I cannot speak for Hannah here, but I know she is already learning about what God’s Will is for her life.  I believe God’s Will is for Gage to grow up in a safe and loving home.  I also believe that God’s Will is for Hannah to speak the truth about the challenges she faces with the perspective of the love of Christ.  And to do so to an audience that only she can reach.  

Gage and Owen: While I do not know what God has in store for them yet, I do fully believe that both Gage and Owen are going to make an impact on those around them.  Those two adorable boys who were born on the same day.  One who was known about for 9 months, and one just 10 days.  One who was born and placed in the NICU, and one born and placed into another family’s arms.  Both are unconditionally loved by the One who created them and by their parents.  And both are uniquely different from others in their own way.  I am so thankful they have one another.

Gage and Owen

So even when the hard stuff seems to be thrown at us over and over again, knowing that we are God’s children and in His care, let’s be bold and shout, “Thy Will be done!”

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Not The Road We Would Have Chosen

Tonight I attended a meeting for parents and caregivers of special needs kids. As we went around the room doing introductions, a common theme arose from staff members of the hosting and presenting organizations. They echoed the same sentiment—that they didn’t plan on a career working with the disabled community. But looking back on the steps that led them to where they are now, it’s clear they are exactly where they are meant to be. What a beautiful perspective.

It got me thinking about my own “path” and had me feeling rather reflective on my last few years. As they described things that were falling into place to land them in the jobs they now have, I was nodding in agreement, feeling like my own experience and circumstances have led me to right where I’m supposed to be – at home caring for my boys. It’s no secret how blessed I feel to be able to do this. But the path to get here was much different than I expected.

road

So often, song lyrics will hit me and speak to my heart. Some that have struck me over and over again are “it’s not the road we would have chosen,” from an Ellie Holcomb song “Find You Here.” Right or wrong, these words describe the way I feel about our journey with Gage. I’ve wrestled with the notion of whether or not I wish things were different. Despite our challenges, we’ve experienced insane amounts of joy over the last few years. Would that intense joy be present in our lives had things stayed simpler? I don’t know. But if I was given a choice to take this journey, without knowing what I know now, I can honestly say that I would not have chosen it. To me, there’s a distinguishable difference between acknowledging that and saying I wish things were different.

But that’s the thing about our life’s journeys. We don’t always get to choose. We may have the best laid plans, and they can change at the drop of a hat. Or it may be a slower and more subtle change, which is how I would describe my own path. After tonight’s meeting, in my reflective state, I was reading through old cards and letters and past journal entries. Looking back on words written months, even years ago, it became evident that God was working on something. I couldn’t see or even imagine it at the time, but He was using those past experiences to bring me to the place I’m at now—the place where I’m meant to be at this moment in time. It’s overwhelming to try and comprehend the ways God is working things out for good. Even now as I struggle to find the words to type, I have to stop and catch my breath (in a good way) with the realization that His plans for Gage’s life and my role as a mom were put into motion long before I even realized it.

I began writing this post with just a title to get started (that I blatantly ripped off a talented songwriter). It seemed to fit with the other emotions whirling around in my head and heart tonight about paths/roads/journeys. But I’m amazed at where I’ve ended up. It seems like every single lyric of that song perfectly describes how God walks our journeys with us. My words feel inadequate to explain how deeply and personally loved I’m feeling by God right now, so I’ll leave you with song lyrics instead. Hopefully they’ll offer some encouragement. Whether encouragement comes from a song, the love of a friend, the kindness of a stranger, or something else completely, my prayer is that we’ll all reach a point in our lives where we look back on our struggles and realize God brought us through them to get us exactly where we need to be.

Find You Here – Philippians 4:4-7
Ellie Holcomb, Rusty Varenkamp, Benji Cowart

It’s not the news that any of us hoped that we would hear
It’s not the road we would have chosen, no
The only thing that we can see is darkness up ahead
But you’re asking us to lay our worry down and sing a song instead

And I didn’t know I’d find You here,
In the middle of my deepest fear
But You are drawing near
You are overwhelming me with peace
So I’ll lift my voice and sing
You’re gonna carry us through everything
And You are drawing near
You’re overwhelming all my fears with peace

You say that I should come to you with everything I need
You’re asking me to thank You even when the pain is deep
You promise that You’ll come and meet us on the road ahead
And no matter what the fear says, You give me a reason to be glad

CHORUS

Here in the middle of the lonely night
Here in the middle of the losing fight
You’re here in the middle of the deep regret
Here when the healing hasn’t happened yet
Here in the middle of the desert place
Here in the middle when I cannot see Your face
Here in the middle with Your outstretched arms
You can see my pain and it breaks Your heart

CHORUS

Rejoice, Rejoice
Don’t have to worry bout a single thing
Cause You are overwhelming me with peace

Don’t have to worry bout a single thing
You’re gonna carry us through everything
Overwhelming peace

 

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“How’s He Doing?”

I remember when Gage was young, I’d often get asked “How’s he doing?” I still get this question quite a bit.  It’s encouraging to know that friends and family are interested in how things are going for Gage and care about what’s going on in his life. But I can’t help but feel like sometimes it’s a loaded question.

It’s taken me some time to figure out how to respond. Are these well-meaning people asking what kind of day he’s having, if he’s in a good mood? Or are they getting at something more? Sometimes those three words are accompanied by a concerned look, a sympathetic smile, a slow nod. Times like that leave me wondering if the inquisitive person is more curious about Gage’s medical prognosis, his latest challenges, or any new milestones we can check off our list. I might be reading way too much into a simple question.

No matter what the intent, I LOVE when people express interest in my son. He’s so lucky to have so many people in his life as cheerleaders and fans! So if there’s ever anything you want to know, feel free to ask away! When I was pregnant with Gage, my mom wrote me a letter and in it gave me some wonderful advice. She said that in raising her own children, she missed opportunities to brag on her kids in an effort to be humble. Her advice was for me to do it differently. At that point, of course she had no idea all the challenges Gage would face. But her words have stuck with me as a reminder to not focus on the things Gage can’t do, but to brag about all the amazing things he CAN and celebrate those accomplishments, no matter how small.

This weekend I had the opportunity to do just that. I attended a wedding in my hometown and ran into several people we don’t see very often. So many of them had seen a video I had posted earlier in the week of Gage taking steps in a gait trainer, which you can see here. When people told me how impressed they were, I got to share in their excitement and beam with pride in my son.

Mustang Gage

Last Wednesday afternoon, we had a chance to check out some different models of gait trainers. The rep brought 3 different versions.  When I first took a glance at the various options, I was sure Gage would need all the support he could get. One model was pretty bare bones and I couldn’t imagine Gage being secure enough in it. Boy, did he prove me wrong! We started him out in the most supportive option, and he tolerated it ok, but didn’t do a whole lot. Then we moved him into the bare bones model, the Mustang, and he was much more interested in stepping. The rep told me he could leave behind both options for us to try out for a few days. Since the Mustang was fairly lightweight, I loaded it into my car and we headed to the park.

Some friends of ours were waiting for us at the park—including three energetic boys who were already busy making laps around the playground on their bikes and scooters. I thought it’d be worth a try to get Gage into his own set of wheels. Once I strapped him in and got him centered on the trail, he took off! I was blown away! I couldn’t believe how well he did on what was essentially his first attempt. It was a great reminder to not let my expectations limit him. I have a feeling Gage is going to keep surprising me. So, feel free to ask me how he’s doing anytime. Just be prepared for a proud momma to brag about her amazing son in response.

 

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Guard Your Heart

“Above all else, guard your heart, for everything you do flows from it.
-Proverbs 4:23

There is so much truth in those words. Truth I desperately needed to read and let sink in today. As I contemplated what to write about this week, I struggled to come up with anything. I want this blog to be positive and uplifting, but lately I’ve been feeling the opposite of that. This verse was the perfect reminder of why I want to keep a positive perspective.

On my journey as a special needs mom, I often have to remind myself to let it make me better, not bitter. For me, guarding my heart means not letting it be hardened by the harsh reality of our world. Sometimes it’s easier to be defensive and cynical than optimistic and positive. I need constant reminders to keep a soft heart, but thick skin.

I feel like thick skin is necessary in our world. Maybe it’s a survival tactic that allows us to get by day to day. Let’s face it, life is HARD. It’s hard for all of us, in different ways at different times. There’s always good in the world, and joy can be found, but no one gets a free pass and an easy ride all the time. Without thick skin, all the tough stuff in life can be overwhelming. I’ve got a long way to Gage in chairgo when it comes to having thick skin. Sometimes I feel like crying at the drop of a hat (or parts of Gage’s wheelchair falling off for no apparent reason!!)  Or I may be easily offended by a comment I felt was rude or condescending. For me, “thick skin” is a reminder to suck it up and get stuff done!

But thick skin on its own doesn’t do any good. The soft heart part of that equation is equally, maybe even more important. As I interact with others, I need to realize I have no idea what their struggles are—what makes life hard for them. Unless I’m treating them with kindness and love, rather than insisting on my own way, I won’t accomplish much. I can get so caught up in trying to advocate for my son that I miss the opportunity to just form a genuine connection with people so we can work together towards the same goals.

Which brings me back to why that verse from Proverbs hit so close to home. It not only served as a reminder to guard my heart, but also left me feeling convicted—an eye opener that the state of my heart effects EVERYTHING I do. When I get bogged down by the hard stuff (tough transitions, new realities, hectic schedules) it takes a toll on my spirit. It effects the way I treat other people. It makes me less patient and more irritable. That’s not the person I want to be. It’s not the life I want to live. Since everything I do flows from it, I’m going to make a better effort to guard my heart.

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Overwhelmed

In the last 3 years, I’ve felt overwhelmed more times than I can count. Before that statement causes you concern over my well-being, hear me out. Some of those feelings have of course been negative, when I’m overwhelmed with worry, indecision, or fear. Or when I have too many items on my to-do list and not enough hours in a day. But just as many times, I’ve been overwhelmed with joy by all the good things in my life—kindness and compassion shown by others, encouragement from friends, baby giggles and snuggles that accompany the realization that I’m doing exactly what I want to do.

gage caleb rocking chair

Sometimes just our crazy schedule is enough to make me pause, take a deep breath and remind myself that we can do this. During this and last week alone, we have 10 appointments on our calendar. That’s only counting the things related to Gage’s care—PT, OT, Speech, doctor’s appointments, fittings for new orthotics, meet the teacher and more. I’m not gonna lie…it can feel like a lot. Luckily, some of those appointments take place in our own home. But in these couple weeks, those have been some of the most overwhelming, because they are our final sessions with our First Steps therapists. Goodbyes are never easy, especially when you’re bidding farewell to people who have been such an important part of your kiddo’s life for an extended time and the end of your visits is totally out of your control.

Another overwhelming appointment in this 2 week span was our annual review for The Next Step – a program to help connect families with resources once First Steps ends. I wasn’t expecting the meeting to be a big deal—just sign some papers and follow up on a few questions. And while it wasn’t a big deal, the review of Gage’s plan stirred up some buried emotions. Evaluations like this force us to acknowledge things we might not otherwise think about. We have to spell out all the things Gage can’t do, recount all the new challenges we’ve met in the last year and attach a dollar amount to therapies, equipment, etc. Let’s just say it’s not the most uplifting subject matter. This is all in an effort to justify getting Gage the help he needs now and down the road. So far our efforts have only left us jumping through hoops, filling out paperwork and waiting for answers. I firmly believe God will always take care of us and do my best not to worry, but focusing on all the unknowns the future holds can make that a challenge.

One of the big unknowns in our immediate future is how things will unfold at Gage’s new school. Tonight we had meet the teacher. I’ve been psyching myself up for the new school year and keep telling everyone how excited I am and how much I think Gage will enjoy it. I do think Gage will thrive there and I trust he will be well taken care of and loved by his teachers and therapists. I don’t question the level of competency or care, but I’m left longing for more information and transparency. I walked away from the night feeling sick to my stomach, with more questions than answers, which is not only overwhelming, but frustrating too.

I’m not trying to have a pity party for myself, just sharing the struggles we’ve

Elvis Gage
Hip, young babysitters have fun Snap Chat filters!

dealt with lately. But like I said at the beginning of this post, there have been just as many instances of feeling overwhelmed in a good way! One of the best examples of this is the amazing friends and family we have who are willing to step in and care for our kids. Last night, I got to enjoy a date night with my husband before his summer break ends, thanks to our awesome friends who watched the boys. On several occasions, friends have offered to babysit for us and although they might not even realize it, this is a HUGE act of kindness and means so much.

Seemingly small acts of kindness can also be the good kind of overwhelming. I won’t soon forget the mom that helped me load my groceries onto the conveyor belt at the store while I tried to soothe a crying baby and keep Gage from losing it. Or the stranger at the ball park who offered help after seeing me struggle to spread out a blanket, wearing Caleb in a carrier and pushing Gage in a stroller while Evan grabbed our snacks from the concession stand. Before I had kids, I always declined polite offers of help like these. I’m not sure why, but I didn’t want to burden anyone or maybe didn’t want to admit I needed help. Nowadays, my need for help is undeniable. I’ve embraced my dependence on other people and oddly there’s a certain amount of freedom in that. Saying “yes, that would be so great” instead of “oh it’s ok, I’ve got it” gives me the chance to be overwhelmed by kindness, whether it’s from close friends or complete strangers.

So even though I struggle and won’t just sugar coat things or plaster on a fake smile, when I really stop and think about it, I can’t deny how lucky I am. I have great kids who love me and have made me a better person. My support system is much larger than I deserve and far greater than most people get. I get to share my life with a man I love and respect and I actually like him and enjoy him too. 😉 And I get to be a stay-at-home mom and spend my days with my sweet babies. When I focus and reflect on all these things, I feel overwhelmingly blessed.

 

 

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The Sweet Spot

We just finished up our final session of OT through the First Steps program. I’m drying my eyes after hugging our therapist goodbye. First Steps has been such an incredible resource for us, but it’s sadly coming to an end as Gage will transition into the public school system’s early childhood program this fall. Change is hard!

I’m excited for Gage to start his new school year, and I’m expecting good things to come from that transition, but it doesn’t mean I won’t shed a few tears along the way. This season of life has me desiring to freeze time for a little bit. Not forever, of course, but I just wish I could press pause and soak up the way things are right now. I think many mommas can relate as kiddos head back to school or start kindergarten, etc. I can’t wait to see all the back to school pics that will undoubtedly fill up my newsfeed in the coming days and weeks!

 

Right now, I feel like our family is living in the sweet spot. It looks much different than I imagined, but I would say that in the grand scheme of things, I’m on a peak, not in a valley. Sure, there are challenges that come along with having a 3 and 1 year old, especially considering the extra help Gage requires and the independence Caleb demands but is not quite ready for. But how good things really are right now is not lost on me.

My thoughts about our future come with so many mixed emotions. It’s a strange spot to find myself in, balancing all the unknowns of what the future holds with the hopes and dreams I have for my family. I’m excited for Gage to continue developing and mastering new skills, no matter how slowly. I’m anxious to see how he’ll meet the new challenges he faces as he grows up.  But anticipation for what’s next is also accompanied by the undeniable reality that some things will get harder as we go instead of easier. Right now, Gage is Gage cuddleslightweight and lap-sized. So even though accessibility is already important to us, there are still ways to “make it work” when we have to. I know he’ll get bigger, which I hope means that I’ll get stronger, because I already feel aches in my back after a long day of carrying him around…and he’s still under 25 pounds! As he grows, his equipment will too, so it might be time for me to hit the gym!

Part of me would like to keep things just how they are for longer than I get to—things like therapy sessions on our living room floor instead of a clinic or school setting. But I think I’ll get used to whatever we need to do however we need to do it. We tend to find ways to settle in to our new normal. I remember when Caleb was brand new and the idea of leaving the house with two kids seemed so daunting. But once I did it and survived, I felt such a sense of relief! It’s amazing the freedom you can find with a double stroller and wide enough double strollerdoorways. I also remember when Gage was brand new and Evan spent hours upon hours reading about CMV and the effects it can have, trying to get a glimpse of what our future might look like. I would remind him to enjoy Gage in that moment instead of trying to solve or fix things or worrying about what’s to come.

I guess I need to take my own advice and remember to enjoy my kids the way they are in the present.  To soak up each stage that comes and goes as we’re in it. Maybe the sweet spot doesn’t have to be a fleeting moment, or something to hope for in the future. Perhaps it can be a lasting state of mind when you look at things with the right perspective. The phases ahead of us may not be easy, but that doesn’t mean they can’t still be good.

“For everything there is a season, a time for every activity under heaven.” Ecclesiastes 3:1

“Yet God has made everything beautiful in its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can.” Ecclesiastes 3:11-12

 

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Guilt – The Wasted Emotion

I keep an ongoing list of writing prompts when random things pop into my head. It’s saved as a memo on my phone so it’s easy to add to when I get ideas. Sometimes it’s just a word or two and more often than not, just a fleeting thought that’s underdeveloped until I get a chance to sit down at a keyboard and think more about it. Recently I started to notice a theme in my writing prompts…over and over again I came across the word guilt. Guilt over past insensitivity, guilt over yelling at my kids, guilt over the feelings of failure I have for not doing enough.

I’ve struggled with guilt over the way I was before having Gage– insensitive and not very empathetic to other’s needs. I was fairly ignorant about the special needs community before having a child with a disability. I felt so bad when I began realizing the challenges we would face for not having paid more attention to things like that in the past, and especially for not doing more for individuals I’d previously encountered in my life.

Another area that leaves me feeling bad is one that’s all too common—mom guilt. I bet every mom has been there at some point, and we probably all have a slightly different definition for it. What it means to me is the guilt I feel for losing my patience or being short-tempered with my kids. I feel like a crazy person when I’m exchanging screams with a 3 or 1 year old, but it happens. I blame sleep deprivation and definitely hit my lowest points in the middle of the night when one or both kids are up and unhappy.

The other part of mom guilt for me has to do with feeling like I can’t or don’t give enough. Again, I’m sure that’s a common theme among moms and know that my situation isn’t unique and I’m not alone in my feelings. But I do feel that raising a special needs child might intensify the mom guilt at times. It hits me the hardest when I realize the whole day has passed by and I didn’t get Gage in his standing frame at all, or he hasn’t even put on his AFOs, or I haven’t stretched him enough, etc., etc., etc.

Another type of guilt related specifically to special needs parenting is one that I haven’t experienced personally. But I’ve read repeatedly about moms who feel guilty for their child’s diagnosis. They feel somehow responsible—that their actions caused harm to their child. I personally don’t blame myself for getting a CMV infection while I was pregnant. No one intentionally gets sick, so even though I may have been able to take some steps to prevent it (had I known more about it) I don’t struggle with the guilt of causing Gage’s problems. My hope is that other special needs parents would be able to work through and get past any guilt that they feel as well.

After reading the word guilt over and over again in my prompts, I decided enough is enough and it was time to get my thoughts down in writing. Perhaps these first several paragraphs give you a little context to where my feelings come from, but that’s not really what I want to share the most. What I’d like to tell anyone struggling with feelings of guilt is STOP! I truly think that, for the most part, guilt accomplishes nothing, other than to make us feel bad and keep us from doing the good work God has for us. Maybe there are times when a person feels guilty for a wrongdoing and it leads to repentance that’s needed, but I think all too often guilt is a tool used by the enemy. The guilt I feel over my past insensitivity is wasted because I can’t go back and change the way I did things before. The mom guilt we all struggle with prevents us from enjoying the moments we do have with our kids, or the moments we have to ourselves when what we need most is a little break.

My point is that by letting guilt overtake us, nobody wins. We’re left feeling sad or believing the lie that we aren’t good enough or we’ve messed up so badly we can’t grow or change. I’m a firm believer that all feelings are valid and need to be processed. But I think guilt is a wasted emotion, all too often accompanied by shame, keeping us isolated and stagnant. I frequently have to remind myself to let go of guilt and instead live in the grace that God offers. As I wrap up this post, I wanted to leave you with a reminder to do the same, and searched for scripture about grace. That search yielded the same words over and over and over again. It was like God was literally reminding me, forcing me to read it repeatedly so the words would sink in. Just look at all the instances of the same message!

bible verses about grace

“May God our Father and the Lord Jesus Christ give you grace and peace.”

Harboring feelings of guilt leaves me feeling anything but peaceful. That’s not what God wants for us. Let’s rely on him to give us grace and peace and let the guilt go.

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Imperfectly Beautiful – My Role As An Aunt

I’m so excited to have our very first guest post from my dear sister Sarah. She has always been a wonderful sister and friend and she’s also a pretty amazing aunt. 

Twelve years. That’s how long I had waited to become an aunt. I had my oldest son when I was in college and my sisters were in high school. As you can imagine, they were pretty cool aunts for a little boy to have (still loving to act like kids themselves). Six years later we had a daughter. Another almost two years later and another daughter. And again just shy of two more years, another son. And my sisters continued to be awesome, fun, wonderful aunts. It seemed like a pretty sweet role. But here I was with four kids and still no nieces or nephews.

Then my sister, Lee, gave me the great news. I was finally going to be an aunt! A niece would arrive and she was/is pretty incredible (probably one of the most clever and entertaining kids I’ve met). Surely there was some spoiling to pay back.

To make things even better, a few months later my sister, Hannah, announced she too was having a baby. Aunt again! And this time a nephew! He snuck in quietly overnight so we headed that way on the morning of July 10 (bonus for me because now I got to see my sister on her 30th birthday!). I couldn’t wait (but would have to because I rode with my parents…and it was morning…which meant we could stop for breakfast). So we finally arrived at the hospital with full bellies and so much excitement to meet my first nephew, Gage Michael Wingo.

skin to skin

He was so tiny. Hannah was past her due date and had a pretty great pregnancy (as far as pregnancies go) so we were not expecting this tiny little guy. I think he was having a little trouble keeping his body temperature up so we didn’t get to pass him around as much as we would have liked, but he looked perfect and Hannah looked absolutely perfect being his mommy.

I can’t say I remember all the details of how things unfolded. Questions. Requests for prayer. Tests. More questions. More prayer. CMV diagnosis. More questions. I remember Hannah seeming a little scared but also so excited and in love with her little boy that it was as if she couldn’t see any differences or concerns. And who was I to question any of it?

The job I’d waited more than 12 years to have and now I felt completely inadequate for my title of “aunt.” I had four healthy kids and wasn’t sure what to do or say or ask about my sweet nephew’s special needs, nor my incredible sister’s joys and fears and reality. I felt unprepared and ill-equipped. How could I relate?

I told my friend (whose daughter, Eliana, was born with a rare genetic mutation the year before) how I was feeling. She gave me some great advice and perspective. And she reached out to Hannah to offer a kind of support and understanding I never could.

The thing is, when I stop worrying about not knowing what to say or do and just focus on loving and celebrating my amazing nephew and his mommy, it’s really not so complicated. Gage is such a blessing! Have you seen that smile? Those dreamy eyes? Heard that contagious laugh? How can you not be happy in his presence? I know I spend way too much time wrapped up in trivial things. Slowing down to just be with fantastic kids like Gage and Eliana–to appreciate how strong and wonderful these incredible little fighters are–is a perfect reminder of how imperfectly beautiful life truly is.

sisters

Bestgen family
Sarah with all her kids, from the left, Moses, Ellie, Norah, and Isaac. Her husband Danny is holding newborn Gage.