Hope

Hope is my 2019 word of the year. I settled on it after realizing that far too often in the last year, I would say things like, “I’m a skeptic” or “I’m being cautiously optimistic” or “I’m trying to manage my expectations” regarding Gage’s care and his outcomes. None of these things are wrong or inaccurate. But this year, I want to change my mindset. I want to throw caution to the wind and hope for the very best. I want to be bold enough to do that. The definition of “the very best” may have changed over these last few years for me. But that doesn’t mean I’ve lost hope. It just means life is always moving and changing and the things can turn out so much differently than we plan. That’s not a bad thing.

When Gage was younger, I used to have recurring dreams about him walking. I could never remember many details about the dreams, but the image of him standing on his own and taking steps down our hall was burned into my brain. I haven’t had a dream like that in a long time. I don’t know what any of that means. But I think as Gage grows older and keeps teaching me about the unique way that HE does things, my hopes for him continue to evolve. My dreams for him living his best life will likely change as we both continue to grow and learn.

These days, I’m hopeful Gage will have the equipment he needs to help him be his best. I’m so excited that tomorrow we are finally getting a feeding chair for him in our home, which we’ve pursued for several months. It will replace a high chair that he outgrew well before that. I’m so grateful to have resources to meet our needs. A new feeding chair might not seem like a big deal, but this is a huge victory for our family. Rather than get discouraged through the process of getting equipment, I need to remember all the ways our needs have always been met and stay HOPEFUL.

I have more than enough material to draw on to remind me of God’s blessings in our lives. Just within the last couple weeks, I shared with another mom my frustrations of having to jump through hoops with insurance to get something Gage needed and how everything felt like a fight. A few days later, my perspective was completely changed when she let me know that another mom friend had a spare item that we could have. The generous soul willing to share her resources with us gave me a great reminder, saying she knew what it was like to not be able to get what your child needs, but also how great it is when God provides.

Another big hope of mine for that year is that Gage will continue to develop his communication. We are so thrilled to have his own speaking device, but at times it can seem like an uphill battle in front of us because of the huge learning curve. Rather than think about all the challenges that come with figuring it out, I want to just stay HOPEFUL that Gage now has a way to interact with us.

Instead of hoping for Gage to walk or say spoken words, my focus has shifted, at least for now. But I am far from hopeless. I really struggle with this topic, and especially defining how I feel about it in spoken or written words. I’ve shared before about denial vs. hope and pretty much summed up that post with an acknowledgement that I can’t articulate where I stand. I’ve learned a lot since then, or at least wrestled a lot more with the concept of hope and defining it in the midst of challenging situations. The whole crazy process of being a mom and the journey we’re on keeps different emotions ebbing and flowing all the time. It’s an ongoing cycle.

Rather than try to explain my stance on hope, maybe I can better explain the value having a word of the year has had for me. Last year, my word was peace. Prior to that, I could make a case for love and joy as focus words. Throughout the last year, trying to focus on peace helped me through some challenging situations. It didn’t mean that it was easy or uncomplicated, but the word peace was often a reminder to refocus my thoughts on something positive. Simply choosing the word peace didn’t make me peaceful by default. I wasn’t always calm and was sometimes anxious and worried when things seemed especially hard. But a simple reminder to breathe and focus on peace was helpful in many circumstances, like when Gage’s seizure activity increased this year, or when we seemed to hit roadblocks or tough choices about his care. Peace was my way to combat the fear that too easily wells up inside me.

The reason focusing on peace brings a sense of calm is the source of that peace – a loving God. He always takes care of us and he’s in control, even of messy circumstances that we can’t understand. The same is true for love and joy – God is the source of those good things. And no matter what, I have to keep God as the source for my hope. The examples of things I’m hopeful here this year may be physical items to meet Gage’s needs, but I know I can’t put my hope in things. Ultimately, I should stay hopeful because the God who provides for us and weaves our story together loves my sweet Gage even more than me.

“I pray that God, the source of hope, will fill you completely with you and peace because you trust him. Then you will overflow with confident hope through the power of the Holy Spirit.

Romans 15:13

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

“Blessed is the man who trusts in the Lord, and whose hope is in the Lord.”

Jeremiah 17:7

“Let your mercy, O Lord, be upon us, just as we hope in you.”

Psalms 33:22

“Hope is one of my favorite emotions because of its humility. It’s not like gladness or joy which stick around just for the good stuff. Hope is my heart’s missionary. It humbly seeks fear and shame and hurt and befriends them. Hope enters the very dustiest parts of my heart, clears out the cobwebs, and whispers of the promise of eternal perfection.”

Maggie Lindley