Month: August 2019

Several weeks ago, a friend brought her kids over to play. I hadn’t seen them in waaaayyy too long, and their sweet mama told them they were welcome to ask any questions they wanted to about Gage. The 4 year old girl wanted to know if he could talk. I explained that he communicates in other ways, and said maybe after we were done playing outside he could show her his “talker.” Then the conversation moved to questions about Gage and Caleb’s dad. Since Evan wasn’t home from work yet, they were trying to figure out everyone’s roles and had to clarify if the bearded man in photos was the boys’ dad or mine. I laughed and explained that he was my husband, but Gage and Caleb’s dad. That seemed to end the Q&A session and the kids switched their attention to the real reason they were there—to play! I thought it was sweet that my friend didn’t try to hush their curious minds, but wanted them to really understand Gage’s differences. And not just according to her explanation, but by asking their own questions.

The kids got to swing, climb and bounce in the backyard before we moved inside to make tacos for dinner. As we were coming in, I was struggling to roll Gage’s chair wheels over the threshold of the sliding patio door. My friend’s 7 year old son patiently waited for us to clumsily make our way inside, then looked at me and asked, “Is it hard for his mom?” Another question caught me off guard in the middle of the task, and confused me a bit. I told him that I was Gage’s mom, thinking I hadn’t clearly explained all the family roles earlier. And then he looked me right in the eye and said, “I know. Is it hard?” That’s when I knew there was no confusion on his part at all. The compassion and empathy of a 7 year old standing in my living room hit me right in the gut. His mom wasn’t there listening or prompting questions. He just recognized my struggle and was brave enough to speak it. I told him that yes, sometimes it is hard and thanked him for asking me that.

We wrapped up the night with some tasty tacos before they headed home. On their way out the door, I told my friend about her son’s question while he climbed into the car and I could sense the pride on her face. There’s something so refreshing about kids’ perspectives. Sometimes questions for kids about Gage’s differences can be hard. I feel like my response is always a little different, depending on the mood I’m in. But I’m always glad when they show interest in him. Questions directed at me aren’t nearly as common, especially from little ones. That in itself was refreshing. This sweet boy wasn’t feeling sorry for me, or looking at me with pity. But somehow the simple fact that he recognized our challenges, on whatever level, made me feel seen and loved.

I try to maintain a positive attitude and share encouragement, rather than focusing on the negative. But neglecting to recognize when things are hard doesn’t make them any easier. Sharing our struggles with others may be the only way to make it through. My hope is that people, whether they’re kids or adults, can understand that even though something is hard doesn’t mean it’s not good. Our lives are filled with so many good things.

¹ Let all that I am praise the Lord;
    with my whole heart, I will praise his holy name.
² Let all that I am praise the Lord;
    may I never forget the good things he does for me.
³ He forgives all my sins
    and heals all my diseases.
⁴ He redeems me from death
    and crowns me with love and tender mercies.
⁵ He fills my life with good things.
    My youth is renewed like the eagle’s!

Psalm 103 : 1-5

Week one of school is in the books for both Gage and Caleb. I’ve been so pleasantly surprised with how smooth our first weeks have gone! Last week, I was thinking about all the meetings or trips I made to Gage’s school, before class even started. We delivered medication, equipment, food, drinks and more, all just to meet his basic needs throughout his school day. Separate meetings were scheduled to share instructions on how Gage’s talker and gait trainer worked. It felt like a lot, but it was worth it. 

I have such a sense of trust in the people who help care for Gage during his time at school. His teacher is uh-ma-zing, which I knew from the first time I met her. But seeing her demonstrate it in the first few days in the classroom has been wonderful. There were a few things in Gage’s IEP that was drafted last spring that I wished were different, but thought I should wait and see how the first quarter in the new school goes before demanding changes. Long before I ever mentioned my thoughts, Gage’s teacher picked up on what will work best for him and has already started including him with his kindergarten peers for things like music and art class. She’s a step ahead of me, but we’re also seeing completely eye to eye and on the same page. It’s such a great feeling.

In Gage’s classroom, there are three awesome paras, helping all the kids get through the day. I feel like they, along with Gage’s sweet, sweet classmates, shower him with attention all day and I know he loves it. One thing I love is that the para who spends the most time with him shares lots of updates with me throughout each day. She greets him as he gets off the bus each morning and has him loaded up and ready to go when I pick him up. I get lots of pictures and even some videos that all make it abundantly clear that Gage is having a great time during his school days.

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The school nurse is awesome and so proactive to make sure Gage gets his meds, even brainstorming and troubleshooting after day one to come up with the best way that works for everyone. Yesterday she told me that they’ve got their routine down now, and she even plays music for Gage while he takes his dose. Finding a way to make taking medicine fun is not an easy task and I’m thrilled that she cares enough to try and do just that.

I told Evan one night this week, that even though I know the numerous people who are involved in Gage’s care each day are there for all the kids, they make it feel like they’re there just for Gage. That’s an incredible accomplishment to me and I can’t help getting emotional when I think about it and how grateful I am for it. Truly, the first week of school has been better than I could have hoped for or imagined. I’m looking forward to everything that’s still to come. I know that as Gage adjusts, learns and grows while he’s at school, I will too. As we need to make changes and continually figure out what works best, I hope I’ll always feel as thankful for “Team Gage” as I do today.

“I pray that you, being rooted and established in love, ¹⁸ may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, ¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”

Ephesians 3:17-21

What an incredible summer we’ve had. As it winds down, I can’t help but reflect on all of our great times. We traveled, swam, grilled, relaxed, got a little work done, and did plenty of playing. It was wonderful. We really soaked up every bit of summer that we possibly could. Even last week when Gage had Meet the Teacher, we went straight there from the swimming pool! Gage was barefoot. I assured his new teacher we’d remember shoes on the first day of school.

After visiting Gage’s school Friday afternoon, we returned Monday morning to meet the paras in his classroom and deliver medications to the school nurse. A full day of kindergarten (versus 3 hour sessions in pre-K) means Gage will need to eat meals and take meds at school. Since it’s the first time that’s been a requirement, I wanted to do as much as possible to help prepare the staff assisting Gage with those things.

Tuesday was the first day of school and Gage’s first bus ride! He was such a good sport loading onto the bus. I followed behind to take a few more things to his classroom and was thrilled to see he still had a smile on his face when he arrived at school. I was lucky enough to meet several of Gage’s sweet classmates as they finished up their breakfast and started morning activities.

The hours seemed to fly by at home and before I knew it, it was time to go pick Gage up and head to hippotherapy. I got a pretty good report from his teachers, although getting him to take meds proved to be a little tricky on day one. Hopefully as he gets to know the school staff better, it will get easier. If not, I’m sure we’ll figure something out. The first day exhaustion set in on the car ride to therapy and I was a worried he’d be way too worn out for a horse ride. But a short power nap in the car was just what he needed to tackle his ride on Johnny Cash. His awesome therapist even sewed him a new bib to match Johnny’s blanket – black with red and orange flames!

I’m so happy that Gage had a great first day. I’m even happier that he’s got awesome staff, teachers, therapists, etc. willing to meet and make plans ahead of time before the first day even started. It helps put my mind at ease. After Gage loaded the bus, I text another mom friend who had encouraged me to try it, reporting that he did great…no tears! She text back and asked, “oh good, you didn’t cry?” I laughed, because I meant Gage. There were tears on my part. I replied with that confession and of course she could relate and was in the same boat during her daughter’s first bus ride. As I drove to school after the bus left, I was weepy, just like I was driving home after Meet the Teacher and our other school meeting. In the midst of those tears, I felt like God was putting on my heart to find joy in this exciting time. It’s ok to feel sad and recognize what’s hard in your life, but if you don’t also let yourself feel joyful during an exciting new beginning, what hope is there for the really tough times? While I willingly let the tears flow and vent to my husband about the extra challenges we face starting at a new school, I want to avoid the trap of only seeing the negative. I need to take a cue from Gage and share in his excitement.

Last spring when we were making decisions about this school year, I was so reluctant. Gage has a July birthday, making him one of the youngest in his class. I had all but decided for sure to keep him home for a year to focus on therapy and other goals, with plans to wait and start school after he turned 6. Then I realized that choice would be more about me not being ready to send him, rather than him not being ready to go. If we’ve learned anything from Gage’s two years in pre-K, it’s that Gage LOVES school. He loves seeing and interacting with friends and I’m convinced he understands and absorbs nearly everything going on around him.

I try to remember to take the lead from Gage. He learns and makes strides on his own timeline. As we start this school year, I’m sure we’ll have to make changes and adjustments, while patiently learning and figuring out what works best for Gage. But I’m so excited to see what kindergarten has in store for him!

^” Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Joshua 1:9