Month: November 2017

Posted on

Thankful

With the Thanksgiving holiday this past week, the things I’m grateful for have been top of mind. I saw so many posts from friends saying what they’re thankful for, and I drafted my own in my head but never got around to sharing it. Today I want to take the chance to share some of the things that make me feel grateful every single day.

Laughter

I cannot resist the sound of my boys’ laughs. Gage and Caleb both have infectious giggles, and they are usually fairly easy to come by. Even if Caleb is mad and crying about something, a game of peek-a-boo or tickling his thighs caleb in shadescan almost always change his tears to laughter in no time. I am so grateful for the fact that Gage is able to express himself through laughter and smiles. While he may not use spoken words, I’m so glad that he’s able to express his happiness to those around him, and consequently brighten their days, and mine, at the same time.

Joy in the Simple Things

I love seeing the sheer joy that kids get out of the smallest things. Some of Gage’s absolute favorites are watching me fold laundry, putting a Gage yogurtnew trash bag in the trash can and taking a bath. He can’t contain his excitement about these seemingly mundane tasks. It’s a good reminder to me to find joy in all parts of our journey.

Perspective

Although our journey has not always been a walk in the park, I am grateful for the ways my perspective has changed throughout it. Challenges have a way of forcing us to step back and see things differently. I’d like to think that regardless of my circumstances, I would grow to be more understanding, open-minded and empathetic as time went on, but who knows if that would be the case. What I do know is that since becoming a special needs mom, I have a new way of thinking about and seeing things. I’m not sure if I would have found that perspective otherwise.

Friends and Family

This one is obvious. We are all so lucky that we have each other to lean on through this life and don’t have to do it alone. But I can’t help but think we hit the jackpot with our support system. I get to keep in touch with my best friends from childhood, rely on parents and extended family for help when we need it and stay connected with former colleagues and friends from college. All of these people and more help us so much and I’m so grateful for that.

Opportunities to Share

One of the things I’m most thankful for in the past year is the opportunities I’ve had to share more of our story. Opening up about the challenges we face and the accomplishments we celebrate has been so therapeutic for me. state meetingWhether it’s our story shared through 7 Billion Ones, a blog or Facebook post, or speaking at the First Steps State Council meeting, I’m so grateful for these chances to share. Not only because they help me understand myself a little better and work through things, but because it allows me to make connections. So, for anyone who follows our journey, posts a comment, sends an encouraging text or simply clicks a link and reads my random thoughts for the week, THANK YOU!

“Give thanks to the LORD, for he is good; his love endures forever.” – 1 Chronicles 16:34

Posted on

The Fight

Sometimes when I’m changing Caleb’s diaper, he wants none of it. He flips and flops and does everything he can to keep me from getting the job done. If we’re on the floor, sometimes he’ll wiggle away and take off running down the hall with an adorable little naked booty, giggling the whole way. Getting that kid dressed can be a fight. In the process of getting Gage dressed, the biggest fight is putting on his AFOs. There are times when I’m doing all I can to bend his knees and position his ankles correctly, all while wrestling with velcro and buckles. It’s a fight that happens fairly often. Sometimes the AFOs win. At least for a moment. I’ll throw them down in frustration and walk away. But inevitably come back and get the job done after I’ve had a second to breathe. I eventually get the job done with Caleb too and he isn’t running around naked all the time, although that is definitely his preference.

These “fights” to get my kids dressed have me thinking of other times when I gear myself up to be a fighter….on phone calls about incorrect hospital bills, requesting increased therapy time on Gage’s IEP, or trying to get his insurance coverage extended to continue the care he needs. What God’s been teaching me lately is that “going to battle” on these issues isn’t always the right way of dealing with them. I don’t want to feel angry, frustrated and offended all the time, or feel like that’s necessary to get things done for my kid.

What I’m learning is that other people or institutions are not the enemy. Our family has been blessed by the fact that everyone involved in Gage’s direct care has his best interest at heart. Of course that’s true of the amazing individuals who choose to have careers in caring, like teachers, therapists and doctors. When they have a chance to work with Gage and get to know him, he wins them over in no time with his charm. I’m so grateful for that. If only Gage could spend some time with the hospital and insurance customer service reps–then maybe they would fall in love and want to fight for him as much as I do.

Things tend to go the most smoothly when I remember to maintain a spirit of collaboration instead of taking on a “me versus them” attitude. We recently worked with the team at Gage’s school to increase his therapy time, which will start after Thanksgiving break. I went into that meeting thinking I would have to argue or really push for increased minutes, but was delighted by the fact that everyone seemed to be on the same page. It wasn’t a fight at all. Just a conversation about an awesome kid and what will help him the most. 

I’m trying to keep the faith that things will work out for Gage. I’m willing to fight to get him what he needs, but also need to remember that I’m not in control and that I can trust in my God who is. That doesn’t mean things will always be easy for us or we won’t face struggles. But perhaps it does mean that I can find a way to face those struggles without feeling angry all the time. Maybe, by the grace of God, I can replace feelings of hurt and frustration with gentleness, kindness and love.

“But now you must also rid yourselves of all such things as these: anger, rage, malice, slander,and filthy language from your lips.

Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.” – Colossians 3:8 and 3:12

fruit of the spirit 

Posted on

Love is This…What Am I?

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth.  It always protects, always trusts, always hopes, always perseveres. Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away.”  – 1 Corinthians 13:4-8

I’m sure you’re probably familiar with this verse. It’s often read at weddings–mine and Evan’s was no exception. While it’s a great model for the love in a mr. and mrs. wingomarriage, it’s about so much more than romantic love. As a young child, I remember my mom giving me the advice to replace the words “Love is” with “I am” and say that every day, always striving to make it ring true. I’ve had varying degrees of success with that over the years.

I think that becoming a parent teaches you to love in a whole new way, and lately I’ve been contemplating how our situation as special needs parents has made me more loving, and convicted by the ways it hasn’t. So, if I compare myself to the description of love in these verses, how do I measure up?

For the first couple things that love is, I think I’m doing ok. I’d argue that my role as a mom has made me more patient. I used to get in such a hurry to get anywhere, or get things done. My road rage would flare up at every red light and waiting in line at the grocery store could make my blood boil. Things are different these days.  grocery tripI think I have more patience because I know things are just going to take longer than they used to. Getting 2 kids out the door in the mornings takes long enough. With the extra steps required upon arrival, like unloading and assembling a wheelchair and loading said kids into it, I’ve come to terms with the fact that we just take longer to do most things. And I’m fine with that. I don’t know why I was ever in such a hurry anyway (aside from the fact that I’m ALWAYS running late).

While I’ve always tried to be kind, perhaps I do a better job now than I used to for the simple fact that I’ve gained a bit more empathy and perspective. Several years ago, I remember reading a handwritten Post-It stuck on my coworker’s computer monitor that said something to the effect of “If you treat everyone you meet like they’re fighting a battle, a huge majority of the time, you’d be right.” Those words really struck me, but until I struggled with my own challenges, I probably didn’t put them into practice as much as I should have. I still need constant reminders to put myself in other’s shoes and simply be kind.

As the verse goes on, I’m reminded of ways I struggle. Love does not envy. I wish I could say that is true of me as a parent, but if I’m being honest, it’s not. Not even close. As much as I try not to, I do envy. I’m jealous…of healthy, active kids…of freedom and flexibility to travel. It’s embarrassing to admit it, but it’s true. Not because I don’t want what we have, but because I don’t want my kids, or myself, to miss out. I know some of my feelings of jealousy are over silly, trivial things. But one of the things I struggle with most is being envious of parents who seemingly aren’t faced with the same tough choices we are.

Other parts of this verse that I struggle with are not being easily angered, or keeping records of wrongs. I tend to turn into a mama bear about certain things, especially when it comes to Gage. Sometimes when faced with challenges, I think we psych ourselves up to “fight for our kid” and take on the world. In an attempt to be an advocate, I’ve been guilty of becoming hardened, cynical and defensive at times. I’ll fall back on my mom’s advice and keep repeating “I am not easily angered. I keep no record of wrongs.” Maybe one day it will be true. Or truer? Maybe?

I think when the struggles come into play, I’ve got to remember that those feelings aren’t love, and identify what they are. If it’s not love, then where is my jealousy and anger rooted? I think the answer is fear. Fear of the unknown, fear of making the wrong decision, fear of not doing enough, and fear of my kid dealing with his own struggles. With pain, hurt, injustice. I want to make it all better for him, and I can’t. And that breaks my heart.

Love always protects, always trusts, always hopes, always perseveres. Do I? God knows I’d do anything in my power to protect my boys. But when things aren’t in my power, do I trust the same God to be in control? To take care of things according to His will? Not always. Do I always hope? I’d like to, but fear and doubt often creep in. Do I always persevere? I haven’t stopped moving forward yet, and haven’t felt like giving up, but have definitely wanted a break from it all at times.

Scripture tells us that perfect love casts out fear. Obviously, I’m not perfect and I’m still dealing with my fears and other shortcomings. But luckily, love never fails, even when I do.

Posted on

Rest

Over the weekend I had the wonderful privilege of going on a girl’s getaway with my mom and sisters. It couldn’t have been more perfectly timed. We escaped to celebrate my mom’s recent retirement and her birthday. It’s so refreshing to spend time with women who just get you and know you better than most, especially when you’re celebrating such happy milestones.

restful weeknd

On the drive to start the weekend, I was contemplating rest and self-care. After a week with Evan out of town and 2 boys fighting colds and not sleeping much, I was really looking forward to a little break. I’m sure we’ve all heard how important self-care is, but it’s so hard to achieve the balance between doing all you need to do and still taking care of you without feeling bad about it. Just wanting a break from your own kids comes along with a certain degree of guilt.

It’s different than other breaks. If you’re burnt out at a job, you may be able to take a short vacation, or even extended time away. But it’s not the same with your kids. To a degree, you live and breathe being a parent. Right or wrong, you start to find your identity, at least part of it, in the things you do for your kids.

So as I headed to meet the girls, anxiously awaiting some R&R, I balanced my excitement with thoughts of how quickly the weekend would end and I’d be back to a routine of appointments, diaper changes and bedtime. I hesitate to even share those thoughts for fear that it comes off as whining. Believe me, I feel extremely lucky that my routine is what it is.

But instead of a weekend that flew by, I got to soak up moments of catching up with my family. We didn’t get in much of a hurry to do anything, but took our time enjoying simple pleasures and plenty of food! We even got a bonus hour because of daylight savings time! I think we were all a little sad to see the weekend end, but as I hurried back home with just a few minutes to spare before Gage’s next appointment, I couldn’t help feeling refreshed. There’s nothing better than walking in the door and seeing the boys faces light up with huge smiles.

The weekend away was a welcome break, and the refreshed feeling that carries over into returning home is even better. I won’t pretend to have things figured out when it comes to self-care, because it still seems pretty elusive to me. But I’m grateful for opportunities to get some rest now and then and I’ll keep taking advantage of them when I can.

“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” Matthew 11:28-30

Posted on

Wonder – Life Lessons from Gage

Recently we visited the newly opened Wonders of Wildlife Museum. There’s been plenty of hype about it, and while my sister and her family were in town we decided it could be fun to go. From everything I’d heard, I knew it would be amazing and I wouldn’t be disappointed. But what I didn’t expect was how much Gage enjoyed it! He was mesmerized by everything there was to see. As much as I enjoyed marveling at each exhibit myself, what I really loved about our visit was watching Gage’s reactions. Just listen to that giggle!

It was a great reminder for me to not hinder Gage by my own expectations. Sometimes we get asked to join friends for activities, and my first thought is, “well, my kids won’t really get much out of that.” If I get into the habit of saying no because it takes a little more effort for my family or because Gage can’t participate in the same ways as everyone else, we might miss chances to see the joy he gets from simple things…the wonder that can be found in the ordinary. Wonders of Wildlife Another take away from that outing was how much more interesting things are when we say yes instead of no. Sure, there might be times we get somewhere and ask ourselves “what were we thinking???” while trying to maneuver a massive stroller or console screaming kids. But is that really so different than experiences of other “typical” families? By saying yes, at least we get to have experiences, good or bad. To me, that is so much better than the alternative—missing out altogether.

I’m forever grateful for the friends that keep inviting us places and including our family. And I’m thankful that in three short years, my sweet boy has taught me some of the most important life lessons I’ve ever learned. I know I’ll learn much more from him as the years go on, as long as I give him the opportunities to teach me.

“Oh Lord, You are my God; I will exalt You, I will give thanks to Your name; For You have worked wonders, Plans formed long ago, with perfect faithfulness.” – Isaiah 25:1