Tag: support system

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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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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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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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Faithful Friends – Our Special Needs Support System

I pulled up in front of my friend’s house just as the rain started to fall. The boys and I had missed out on the Christmas parade we were trying to get to because I was running late as usual.  Evan was busy that evening, so I was flying solo and totally underestimated the amount of time I needed to dress and load 2 boys into the car. I frantically tried to make my way to the parade, but kept running into cop cars blocking the route. My friends at the parade let me know it was short and sweet and said to just meet at their house instead. As I parked the car, I was mentally preparing a strategy to get both boys inside, keeping them somewhat dry, when my back door flew open. A Christmas boysfriend grabbed Caleb’s car seat and asked what else he could take inside. Shortly after, another pal came out and scooped up Gage in her arms. I breathed a sigh of relief and ran inside behind the rest of the crew. This is just one of the many examples of our friends lending a helping hand.

When I first started connecting with other special needs parents, many of them echoed the same sentiment—that you need to gain a new group of friends because your old friends just won’t “get it.” While I appreciate that special needs parenting comes with different challenges than raising other kids, I thank God every day that this has not been our reality. Don’t get me wrong, advice and insight and just relating to other special needs parents has been invaluable on our journey.  But luckily these new connections have only added to, and not replaced any friendships.

I credit this to the amazing group of friends that we have and what kind and caring people they are. I’ve always felt that one way God shows his love for us is by the people he places in our lives. He keeps proving that to me over and over again, whether it’s through my sisters who’ve known and supported me my whole life, an amazing man who turned into more than just a friend at the perfect time, or faithful friends who lovingly accept our entire family just the way we are. I’d be remiss if I didn’t acknowledge that Gage also deserves a lot of credit for our friends staying close.  He is such a little charmer and irresistible, not just to me, but to so many people who know him!

Add-on advocates

We are lucky enough to have friends (family members are included in this category) who go out of their way to “get it.” They learn about Gage’s diagnosis and help spread the word to others. Their eyes are opened to new concerns that may never have occurred to them before. They become advocates by association simply because they love and care about our little guy.

Don’t miss it

At times, my friends even help me realize things that I might otherwise miss. I’ll share an experience about Gage with them, and their perspective on it reminds me just what an awesome kid he is! Sometimes it’s easy to get caught up in all the dos and don’ts and responsibilities of parenting that we forget to just soak up and enjoy our kids’ unique qualities that make them who they are. I love being reminded of this through a friend’s outside perspective.

Get by with a little help

At other times, friends have helped pull me out of a dark place. Whether it’s through prayer, an encouraging text message or listening to me on a walk and not freaking out when I start to cry, I’ve felt supported and lifted up in so many ways by those around me. As I began to slowly realize Gage’s challenges weren’t something he would outgrow or get over, I slipped into depression. Without the friends sticking by my side I don’t know how I would have made it through. The isolation of Santa Gageraising a special needs child is real, but it doesn’t have to get the final say. We aren’t meant to do this life alone, regardless of our situation. You might be raising kids, caring for an aging parent, or just getting from one day to the next pulled in different directions by the demands of work, school, and the overall busyness of life. Thank God we can connect with each other and ask for help. And if we’re really lucky, we have friends who recognize our need for help before we even ask…and carry our kids inside through the rain.

“Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. But someone who falls alone is in real trouble. Likewise, two people lying close together can keep each other warm. But how can one be warm alone? A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken.” Ecclesiastes 4: 9-12