I think he will walk.
Therapists, doctors, friends all repeatedly tell me this, “I think he’s going to walk.” And I agree. I think he will walk. It’s very exciting, especially given his diagnosis at the outset.
But I have to say as excited as I am about the fact that he’ll likely be more mobile than we expected, it doesn’t heal all the pain for me. It doesn’t cure my son’s genetic diagnosis. It doesn’t fix the rest of the problems that we deal with on a daily basis.
And so I struggle to celebrate it fully. It’s good news. It’s on the horizon. I can almost visualize him wandering around our house getting into all sorts of trouble with the same familiar gait of other kids with Cri du chat syndrome. He still has Cri du chat syndrome though. I love Nathan, but I DO NOT like (I tell my older son not to use the word “hate”) Cri du chat syndrome.
A few weeks ago I sat down with three therapists on my family room floor. As Nathan crawled around and demonstrated his play and communication skills, they did an annual evaluation of his progress. It was the first one of these meetings that I felt prepared, competent, and legitimate in my role as mom. I contributed valuable goals for the next year. I challenged some of their assessments of what he couldn’t do, mainly including more speech therapy and starting to work on early argumentative communication apps on an iPad. Most importantly I didn’t cry in this meeting like I did last year. Overall, I’m becoming more of an expert on my son.
Prior to this annual meeting I went through the HELP developmental charts and highlighted Nathan’s progress in the last year. You can see by this picture that the first year is marked in yellow. His second year is in pink. It’s encouraging to see all of the ways he has grown and developed in the last year. He’s not static in his development. At the same time he’s two-years old and averaging about nine months developmentally. That’s. Hard.
I have my firstborn son to compare him to–everything that my slow-to-walk preemie was doing that he isn’t. I have my nephew to compare him to who is four days younger than he. Over vacation I watched home movie reels of when my sister and I were toddlers. It was shocking to see how much we were doing at such a young age–walking before age one, pumping a swing as a toddler, playing with toys in the way they were intended, and every movement and facial expression was so typical. I have so much to compare him to. I know that I’m not supposed to, I just do.
After a therapy eval like the one I just described, it’s so tempting to shift into a self-sufficient mode. It makes me want to up the ante and give him more therapy. I live in a society that values progress. Therefore I want to see progress and I want to see him doing things. And he is. But what about what he isn’t doing? Because if I celebrate one thing that he is doing, that implies that I have to grieve what he isn’t doing. He isn’t eating. He isn’t talking. He isn’t understanding things on the same level as a typical two-year old. And he has some medical mysteries surrounding his heart and kidneys that are complicated and potentially life threatening.
Once again God is reminding me as I navigate the world of Nathan that it’s not about the external. It’s not about what is going on with him developmentally or cognitively or even medically that is important. As much as I would like it to be about the things that I value, it’s about the things that God values.
I’m thankful for God’s gentle reminders written all throughout His Word:
- “But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong.” -1 Cor 1: 27
- “It is much truer than the members of the body which seem to be weaker are necessary.” -1 Cor 12:22
- “My grace is sufficient for you for power is perfected in weakness.” -2 Cor 12:9
- “So the last shall be first, and the first last.” – Matthew 20:16
This is the only way I can hope to celebrate these earthly accomplishments. When my heart knows deep within me the true value lies in the eternal work that God is doing through my son. I can breathe a little easier. I can live less on high-alert. I can cheer when he takes several steps in his new, less supportive walker. I can trust in the promises of God and His upside down Kingdom. The world may not recognize it, but this is my promise, this is my hope.
For God sees not as man sees, for man looks at the outward appearance, but the Lord looks at the heart.” 1 Sam 16:7