Tag: special needs

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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

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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

 

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One of Those Days

It’s been one of those days. One of those really, really good days when I feel loved and personally cared for by my Creator. I was driving to pick up Gage from school earlier and I looked in the rearview mirror to see Caleb making adorable faces from the back seat. I felt overwhelmed with a sense of gratitude. Usually when we hear someone talking about “one of those days” it has a negative connotation, but today for me is exactly the opposite.

I keep encountering reminders from my Heavenly Father of just how awesome his love is for us, and not just for “us” but for me, on a personal level. I’ve teared up a couple times today, but in the best way. In the car earlier, the song on the radio was “Control” by Tenth Avenue North. Just the idea that God wants us had such an impact on me in that moment. I was contemplating how things tend to fall into place, for Gage and in other areas of our life, even though all we can see at first is the big, scary problems. A great reminder to trust in God’s control.

Later in the day, I came across this awesome video from fellow Springfieldian Jeff Houghton with a powerful reminder that we can all do something where we are. Our dreams don’t necessarily have to take us to a different place geographically, but, wow, do they have the potential to take us to a new place within ourselves. Dreams can seem like such a grand idea that sometimes I think we discredit the small ways our lives can change by the paths we choose, regardless of how “ordinary.” When I first watched the video it made me tear up (it’s really good, you guys) but I couldn’t quite put my finger on why. I think what I really love about it is the sense of empowerment that you can make a difference right where you are.

Who knew I could say I’m living my dreams simply by being a mom to 2 amazing boys? That these adorable, stubborn, hard-working cuties could fulfill yogurt paintdesires I didn’t even know I had. And that our journey would give me the opportunity to share and connect with so many great people. A few days ago someone gave me some wonderful advice, telling me to expect good things. It really struck me, and he said he meant it and it was a lesson that took him a lot of years to learn. What a simple and lovely philosophy to adopt! I’m forever grateful for these little nuggets of encouragement and basking in the glow of another “one of those days.”

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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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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.
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Love Tinted Glasses

I’ve written before about not noticing Gage’s physical “flaws” when he was a tiny baby. I couldn’t see poor coloring, an abnormally small head, or anything else wrong with my little boy. All I saw was a perfect and precious gift. It’s like the love I had for my baby overpowered my perception. I like to call it “love tinted glasses.”

Don’t get me wrong, Gage was and is adorable. I mean, look at this face!!

Ice Cream Gage LTG

But it was easier for others to notice his differences than it was for me. Gosh, I wish I was more like that with everyone I encounter! That would be a much better alternative than being quick to notice physical shortcomings in others or myself.  If we all saw people through a lens of love, the world would be a much better place.

I could make a feeble attempt at explaining how to see people more like that, or go on about how becoming a parent makes it much easier, or talk about how magical it is to watch a baby sleeping peacefully. But you know what they say – a picture is worth a thousand words. With their permission, I’d like to share some photos of parents, grandparents, siblings, friends, etc. looking at the special people in their lives with their love-tinted glasses on.

Gage and Gramps on the tractor LTG
Grandpa Keith gives Gage his first tractor ride.

 

Fletcher's Face Paint LTG
Sweet Audrey watches her big brother, Fletcher, get his face painted at his pirate and fairy themed birthday party.
Michelle and Eli Halloween LTG
Michelle (aka Mom) helps Eliana show off her amazing Halloween costume.

1 Corinthians 13: 4-7: Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out.  Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

I’d love to add more photos to this post and keep it growing. If you have a picture that captures the unconditional love shared between people in your life, feel free to email it to hannahwingo@gmail.com.

Photos submitted by Jessie: 

blue bird group
Teens from Fellowship of Christian Athletes interact with residents at the Blue Bird Orphanage, a home for special needs children and adults, on a missions trip in Nicaragua.
blue bird friends
Making new friends at the Blue Bird Orphanage in Nicaragua.
blue bird dancing
Nicas and Gringas dancing at the Blue Bird Orphanage.
back massage
Will gives his new friend a relaxing back massage.

Photos submitted by Lindsay: 

boat ride
A momma looking at her sleepy boys with love after a full day of boating.
LJ and Erin
Another momma trying not to worry about being without makeup and looking through a “selfie” lens at her baby who is quickly outgrowing her lap.
Elise and Roxie
A girl who loves her dog.

Photos submitted by Cara: 

Matt and Miles
Daddy Matt and Miles sharing snuggles.
Cara and Miles
Smooches at sunset.

Photo submitted by Lizette: 

meeting papa
Millie meeting Papa for the first time.
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Leap of Faith

barb and gage
Tiny baby Gage with his sweet and thoughtful pal Barb.

“Sometimes your only available transportation is a leap of faith.” This is printed on a magnet given to me from Barb, one of my favorite coworkers, on my last day in the office. Barb’s an amazing person and friend and has a knack for giving the perfect gifts. This statement rings so true for me related to my decision to stay home with the boys. What once seemed impossible is now our reality.

I spent countless hours reviewing our budget, exploring different insurance options and trying to find any way possible that made sense for us to give up half our income. That was such a scary thought, but my desire to be home just would not go away. We’re only a few months in, and of course we’ve had to make some changes, but I think Evan and I have both been surprised that we haven’t felt more strapped than we have. When we crunched the numbers on paper, we expected to be dipping into savings by now, but that hasn’t happened yet. It’s amazing the way we’ll end up with a pleasant surprise from one source or another, and having just what we need.

I have to remind myself of the ways we’ve been taken care of each step of the leap of faithway. It’s so easy and tempting to worry about the future. In just a few months, Gage will age out of the First Steps program and the assistance we’ve had in paying for equipment will go away. The next hurdle to get past will come when my COBRA insurance coverage runs out and we have to make tough choices about our next steps. All of that is very daunting, but if we’ve been taken care of so far, I have to believe that trend will continue. I hope I’m not being blindly optimistic, because I realize we’ll likely still face many challenges ahead.  But when I have no other way to keep moving forward, I’ll look at that magnet on my fridge and remember to use the only mode of transportation I have left—a leap of faith.

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Love/Hate with A/T

Disclaimer: I try to avoid complaining or having a negative tone in my posts, but this one walks the line. I completely recognize that our equipment needs are far less than many other families and don’t want to be insensitive to that fact. I’m simply a mom trying to honestly share my feelings, no matter how unjustified or selfish they might be.

My son needs some help to accomplish what’s easy and natural for most kids playing piano in standerhis age. We’ve learned a lot about the assistive technology (A/T) available to help him. The variety of offerings can be amazing and innovative. I’m so thankful that even though Gage can’t stand on his own yet, a stander gets him in a proper upright position and allows him some mobility. So why do I also fantasize about pushing that metal, padded, Velcro contraption off a cliff???

Each new piece of equipment we order comes with the excitement and hope that it’s going to make a big difference in Gage’s outcomes. God knows I’d do anything I could to help him and give him as many opportunities as possible. I love that I’m able to wheel him around the house with me while he stands or sits, that while wearing his AFOs, Gage has more confidence supporting his shopping at Sam'sweight, and that an adaptive seat enables him to ride in the cart while I grocery shop. I know how lucky we are to have equipment that makes a difference in his life and I’m very thankful for that. Our early intervention program has been a HUGE blessing, frequently footing the bill for any equipment his therapists recommend. But I still get a knot in my stomach when I see the outrageous price tags on these items, knowing that G will soon age out of the program.

When new A/T arrives, our initial anticipation often turns into frustration with the design or functionality. Why isn’t this part adjustable? Couldn’t they have made it easier to clean? Why does it have to be so…freaking…HEAVY??? And while I’ve gotten better about managing my expectations, a new device never lives up to my unrealistic hopes of a magical fix for whatever issue we’re trying to address.

Deep down, I know the real reason for the love/hate relationship I have with Gage’s equipment, devices, braces, etc. As grateful as I am to have all these things to help him, I wish he didn’t need them. I want to snuggle his baby soft skin with no hard plastic or scratchy Velcro in the way. I want to get him swingingdressed without forcing his limbs and joints  to bend into the correct positions. I want to take him for a walk in the park without securing a dozen snaps, straps and buckles first. But in the end, I know how lucky I am that I get to do all of these things. It’s a privilege for me to raise this sweet boy. I’m so thankful he’s healthy enough to be outside. If a few extra steps or heavy lifting are what it takes for Gage to be able to do things that he otherwise couldn’t, then sign me up! It’s a small price to pay to see his adorable smile and hear his infectious giggle when the fresh air hits his face.

 

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Better Not Bitter

Having a child with special needs is a roller coaster of emotions. There are so many highs and lows, and it’s tough to constantly be teetering back and forth between moments of elation and celebration and those of sadness, confusion and fear. During the first few months of Gage’s life, it seems like we were constantly at one doctor’s office or another. I remember how excited I would get over each and every ounce of weight he gained. I would send out mass text messages to family and friends proudly announcing any weight gain, or happily reporting positive results from a hearing or vision check. But there were other appointments that made it harder to follow up with a good report. Visits to the neurologist sometimes led to more questions than answers.  Rather than leaving and sending a text saying “Gage’s brain ultrasound looks great!”, I was Googling things like “intracranial calcifications” and reading all the worst case scenarios.

The lows of my emotional roller coaster weren’t always caused by doctor visits. Sometimes the trap of comparing my child to other kids is why I ended up in tears. I found myself being jealous of the most trivial things that other kids could do, or having misplaced animosity towards other parents with typical concerns like teaching their toddlers to potty train or learn their colors. When I found myself struggling with resentment towards my other mom friends, I knew something had to change.

Every parent has challenges and struggles and I don’t get to feel sorry for myself or expect people to tiptoe around my emotions just because my child’s challenges are different than theirs. I realized that I need to feel all my emotions, but I get to choose how I let them affect me. My mantra became “better not bitter.” I don’t want to focus on the negative all the time. Although I can’t level out the peaks and valleys of our roller coaster, I can choose to look for the good things in our situation. And believe me, there are so many good things…snuggles from a sweet, sleepy boy…Gage’s “dancing” when I turn on the radio and he bobs his head to the beat…giggles and splashes in the bath tub with his little brother, just to name a few.

I shared my mantra with my husband, and he helps hold me accountable. He is my go-to person to vent to, because of course he gets it. But when I start to go on and on about something that bugs me, he’ll say “better not bitter” and totally call me out on the pity party I’m having. Obviously, I’m flawed and broken and have a long way to go. But I’d like to think that little by little I am becoming better and not bitter.
Better by being more patient, compassionate and empathetic than I used to be. Not bitter by letting go of trivial things I can’t control and by focusing on the positive and celebrating the joy found in each day. I know I’d be even more of a lost mess if I didn’t have the grace of God and the wonderful people he places in my life to help me along the way.

“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.” Ephesians 4:31-32