Memorial

When I wrote a letter to Walker on his birthday, I talked about hard not equaling bad. Hard is what ultimately grows us. While I absolutely believe that, hard is also just hard. Hard means tears, turmoil, pain, frustration, self-doubt, isolation, and the feeling of failure, to name a few.

I've been chewing on Exodus 14 for a few days and trying to figure out why God took all night to part the Red Sea. The Egyptian army had cornered the Israelites, so the angel of God and the pillar of cloud moved between the two groups. Then it took all night for a wind to blow and the sea to part. ALL NIGHT. The Israelites were freaking out.

Then the angel of God, who had been traveling in front of Israel’s army, withdrew and went behind them. The pillar of cloud also moved from in front and stood behind them, ²⁰ coming between the armies of Egypt and Israel. Throughout the night the cloud brought darkness to the one side and light to the other side; so neither went near the other all night long.
²¹ Then Moses stretched out his hand over the sea, and all that night the Lord drove the sea back with a strong east wind and turned it into dry land. The waters were divided, ²² and the Israelites went through the sea on dry ground, with a wall of water on their right and on their left.

The passage also says that God will use this whole incident to show the Egyptians who he is and to bring glory. I am pretty sure they would have known God did it had he parted the sea immediately when they saw the Egyptians. Splitting a large body of water into two makes a statement.

And I will gain glory through Pharaoh and all his army, through his chariots and his horsemen. ¹⁸ The Egyptians will know that I am the Lord when I gain glory through Pharaoh, his chariots and his horsemen.”

So there was something about the wait that was intended to bring God glory and show them who he is, I think. While this passage doesn't specifically say their frame of mind while they waited, it didn't start off all that well.

¹⁰ As Pharaoh approached, the Israelites looked up, and there were the Egyptians, marching after them. They were terrified and cried out to the Lord. ¹¹ They said to Moses, “Was it because there were no graves in Egypt that you brought us to the desert to die? What have you done to us by bringing us out of Egypt? ¹² Didn’t we say to you in Egypt, ‘Leave us alone; let us serve the Egyptians’? It would have been better for us to serve the Egyptians than to die in the desert!”

They asked Moses if he only brought them to the desert because there were no graves in Egypt! They've been literally following a pillar of smoke and a pillar of fire and still they don't think God will save them. Despite significant signs that God was with them, they didn't seem to demonstrate an abundance of faith. So God took all night long to do something he always knew he was going to do. I think it goes back to hard things. What a long night that must have been. I bet they cried, and prayed, and got mad. They probably fought with each other, then hugged each other, grateful to have someone to go through this with. Maybe they alternated between being really thnkful for the protection and angry that they weren't being saved. When the sea parted (FINALLY!) they must have been overjoyed. And shocked. They would never forget what they endured and how God came through for them. They could tell their children and their children's children about their Rescuer. Had the sea parted immediately and they pranced across with no worry, would it have made the same impression? I'm sure they would have been relieved and impressed, but would they have told the story in their old age? I don't know. Maybe the significance of the wait was to really show them their own inability to save themselves and their need for a Savior. They were protected in the wait but probably not the way they wanted to be. Their safety wasn't certain to them.

Back to Walker. Being his mom is a privilege and I love him from the top of his head to the tips of his toes.  It can also be difficult to know what is best for him. There are many, many times I have no idea what I should be doing to love him the best way, the way he needs. I know there are people reading this that have much more difficult circumstances. I may look back on this in five years and wish this was the hardest thing going. Regardless, this is our story right now and the fact that it's easier than many others doesn't make it less real for our family. I don't know if he'll get a diagnosis of anything or even if he needs one. I don't care, other than to know how to advocate for him and figure out what he needs to function. We had a little boy stay with us a few days a couple of weeks ago and watching him navigate life effortlessly brought me to tears. Walker's days aren't like that. He struggles with things most of us don't even notice. But God is in this with us and he is moving. He has given me an ANGEL that has been trained to equip kids just like Walker. My sweet friend has a heart for this and loves Walker. She has made tools for him, shown me how to use them, prayed for him and encouraged both of us. Our days are changing from one long battle to a smoother, more predictable and enjoyable time. We're able to do normal things, without it ending in a fit that might last the rest of the day or into the next. Walker is more secure. He's happier.

One day in January, God did something in Walker. He made a connection, flipped a switch....something. January 19th, as usual, I couldn't communicate with my little boy. He just was unable to process what I was saying to him, something a 2 yr old, if not younger, should have grasped. It was the norm but for some reason it got my attention more that day. I tried and tried to get through to him but it just wasn't happening. I started to get really concerned, finally letting reality come in that this isn't normal, regardless of what pediatricians say. He isn't their son. Time and consistency were not going to change the course he was on. January 20th, he got it. He woke up and communicated. He hadn't ever answered a question with a real "yes" or "no" that wasn't related to a basic need. He would usually just stare blankly and parrot back the last few words I had said, if he responded at all. Or he would scream. And scream and scream. That day, he responded to my questions and coherently answered. Tom was at a men's retreat as an intercessor. His whole purpose that weekend was prayer.

God has sent help in other forms as well and given us days that are so good I see where we will be one day. It isn't without setbacks and will take work. But we'll get there. My little boy for THE FIRST TIME, came up and asked to do something with me. He sat down and played a game with Harris, taking turns and sitting still, engaged and understanding what was going on. I cried and cried that day, so happy. He noticed my emotions and asked if I was crying. He'd never noticed anyone else's emotions before. He is enjoying preschool and doing well! He did great at church and was even a helper. This is HUGE. He has struggled in every single environment he's been in, until now. I gave him a book and he said thank you and was excited to read it. He asked for a muffin. I told him we didn't have anymore but that I would make some tomorrow. He said, "All right, thank you mommy." Before, he might have screamed for 3 hours over that. These are such ordinary things but they've never really happened with him. We're getting there. It's like his mind has been unlocked. I don't really know how to describe it.

Most kids were born with all the skills Walker is acquiring now. Walker could have been, too, but he wasn't. I think we're in the stage right now where God is starting to part the sea. We've been in the stage where the angel and pillar of smoke were guarding us, and we were trying to work it out on our own, terrified. I've never felt abandoned but I also didn't know where we would go from here. All of the methods we tried failed miserably, and we tried them ALL. I kept thinking, this MUST become easier at some point, but it just hasn't. Until now. I can celebrate God moving in this precisely because of all the waiting. I think we went through every scenario and exhausted all our options. We just were not capable of doing this one on our own and maybe it took us coming to that point for things to change. There are days I've been so patient, I've marveled at how the Holy Spirit moves because no human on the planet is capable of such grace. Unfortunately, there are also days, MANY more of them, that I have thrown a fit to rival my child's. That also brought me to the realization that I can't parent these kids. I am totally unqualified for this. Completely. On my own, I think I would have a nervous breakdown.
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I want to write this all down because time and time again people are reminded to build memorials to the Lord, to remember what He's done. They're also told to tell their children. When Walker is old enough, I want him to know what God did for him and what God has already done through him. Tom and I are better for having struggled along with him. We're more compassionate, more patient, more appreciative of things we once took for granted. Going through this has released me from so much fear. I was TERRIFIED of having a special needs child, for some stupid reason. TERRIFIED. Now, it doesn't matter if I have a child that receives a label of some kind. My child is my child and calling them something doesn't change that.

I also write this because I want to remember where we started. The days are getting easier and when a hard one sneaks up, it's a slap in the face. I don't ever want to forget just how dark some of those days were because I want to be able to fully appreciate where we are now. There are all sorts of pieces to put into place, but none of them even had a chance until he changed in January.
 

I think it's also a new beginning for us. God put a verse on my heart the other day.

See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.
Isaiah 43:19
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This marks our new start, a clean slate. The past couple of days Tom and I have just marveled at what Walker has done. Harris asked him to come sit down next to him, and he said "Sure!" and ran over. So simple, we never would have looked at each other and whispered, "Did you see that!?!" We would have missed the beauty of that moment.

I love my little boy, so much. I don't love him more now that he is in a new place but I am free to bond with him in a different way. We can enjoy things together. He can experience relationship in ways that he hadn't been able to. It opens doors for him. I am so excited over the breakthrough we've seen and I just pray it continues to develop. It's an act of faith to publish this because we've seen minor improvements before, enough to build our hope. Then, it fizzled. He could regress. While there is work to be done, I don't think he'll go back to the way he was. I believe God moved and is moving and will allow us forward progress.

When I see Walker do things he NEVER could have done, I get choked up. He is a walking, talking memorial to the grace of God.

I'm so thankful and humbled to everyone who prayed for him and for our family.

16 Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
Heb 4:16