Month: August 2017

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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.