hard days

1.28.2022: This is a post I wrote a few months ago. It is real and raw emotion. Interestingly, I do not feel this way anymore. We have new challenges in this season as Ryan fell in his room and broke his leg on Christmas evening. That leads to a whole new list of issues with him not being able to walk, get in and out of the car, and such. Let me just say lifting a 170 pound 18 year old who cannot use crutches is not an easy task. It is a good thing I lift weights! We go back for more X-rays at the end of February. Anyway, perspective is everything, and this is just a season. As my mother in law is known to say – Don’t think about it; just do it!


I have been thinking a lot lately about Ryan’s decline. He has been fading…becoming more distant, not desiring human interaction, fewer smiles, less play, more sleep. His countenance is fading away, slowing like the setting sun. One minute it is bright and present, and the next it is nearly gone.

I have been having a hard time dealing with it, accepting this new normal. I miss the boy who would go to the garage door and pound on it with his fist and jiggle the door handle because he wants to go on a drive. I miss the boy who used to throw balls for long periods of time and get into things. Now he will spin a toy for a couple time then he is done. His interest in play and interaction is fading. He sleeps more and is perfectly content to sit in one of the bedrooms away from people.

Tonight Travis came home from work, we sat down to eat dinner, and I was very edgy. I was sharp with my words and was not kind to him. I cut him off when he was talking, and I was very irritable. It really came down to me being upset and trying not to cry because I have been struggling with Ryan’s new normal. We talked about it tonight, and he said when I talk about it to others – and he feels like I have been telling people a lot lately about how he is fading – that it really bothers him because he does not want people to feel sorry for us. He does not want people to know the truth of Ryan’s health because people will treat us like we are victims, feel sorry for us, not know what to say and make it awkward. He asked me if I need to see a counselor, and I said I would think about it. I do not think I need a counselor because I am not depressed. This Ryan thing does not dictate my day. It does not make me cry every day. It does not make me want to sink into a deep dark hole and never come out. I know the walls of depression, and how they close in. I know the numbness and overwhelming weight of clinical depression and how hard it is to keep my head above water. And that is not at all what I feel with Ryan.

What I feel is the need to manage my emotions, to talk through this new normal, to express my thoughts and worries because that is how I cope. I am a talker. I need to verbally vomit everything I think. I need to speak life to my thoughts and feelings. That is my way of managing and dealing with whatever I am facing. Travis on the other hand is private. He does not talk. He does not acknowledge his feelings and share with others what is on his heart. He keeps it all to himself, and I usually have to drag it out of him. We could not be more opposite. So tonight the frustration is this….how do we both get our needs met and not offend or irritate the other person? I need to talk, and he wants it kept quiet. Polar opposites. How do we support each other when we want and need different things? He gets frustrated when I talk, and I feel squelched and diminished when I know he wants me to be quiet and not acknowledge and put a voice to everything bubbling to the surface. Yet we have successfully managed our differences through 27 years of marriage thanks to a lot of hard work and communication.

Earlier this evening I was watching a TV show – some home improvement thing where a couple goes in and redesigns and remodels someone’s home. They made a porch swing for the woman and put Isaiah 26:4 on the chair – the male host branded it into the wood. It says: Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal. I went on to read the rest of the chapter, and my eye caught verse 3 – one I’ve known for years….you will keep in perfect peace those whose minds are steadfast, because they trust in you. Through all the changes, all the ups and downs, God is the stable in our lives, He is steadfast and true, He never changes. He can be trusted, He is proven reliable, He will always provide. He will see us through the changes to come when Ryan continues to fade, gets weaker, eventually goes home with Jesus.

Part of me prays God will take Ryan quickly, peacefully and soon. And the other part of me never wants him to leave no matter how hard it gets. Part of me wants to be free from the constant caretaking and responsibility while the other part of me wants to manage his needs and cares every day because I know I am doing good work, taking excellent care of him.

I pray the day never comes when I am not thanking God for Ryan – the good and the bad, the difficulties and the celebrations. There is sorrow but much joy. Ryan is a complete, beautiful gift from God. As I heard Him speak to me so many years ago, he is as I intended him to be. The Lord knew exactly what he was doing giving us Ryan. And that means He will give us the strength to get through whatever lies ahead. What matters most is Ryan is loved. We just adore the little guy.

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