I surpassed the speed limit by more than a little as I frantically tried to catch up to the transport van that picked up Rylie for her first day of school. For some reason, a school bus seems so much more safe and professional, but the idea of an adapted minivan picking her up with two strangers who I’ve never met felt more than unsettling as I thought about them trekking 10 miles to the east side of Cleveland. So, what did I do? Followed them of course! To ensure they knew where they were going, that they followed all traffic laws, and didn’t make any unplanned stops. Except, when I whipped my Toyota Sienna sports edition minivan out of the driveway behind them, they had already turned the corner. I heeded no speed limits as I was determined to catch up to them. I had them in my sights until I got stuck behind a truck that did heed the red light laws, and the next 3 lights after that. They were gone, and there was no speed high enough to catch them on I-90 East. My heart raced and I felt anxious and frustrated that I wasn’t able to follow them as I intended. And then I sensed God say in my spirit, “You have to let it go. Let her go.” I needed to let go and let Jesus, because he has proven faithful every step of the way in getting her to this exact point today. And then ironically, but not so ironic because #God- the lyrics to the song through the Bluetooth played: “you never let go, you never let go….God through it all, you will never let go….” And I thought, how ironic that in order to allow your faithfulness that I need to let go, and all the while you will never let go of me, or Rylie…
Yes Jesus, in order for me to let you continue to hold all the things, I have to fully let them go. Such a simple word picture, and yet something I’m that is one of the most difficult for us as humans. To give up control. It is the constant struggle. Because for some reason we tend to think if we remain in control then things will go according to plan. We will know all the details, do all the things, and run ourselves ragged to avoid losing control. But where is the faith in that? There is no faith in having a completely controlled outcome. “Faith” when defined as a noun is: “complete confidence in a person or plan.” We can choose to focus on our plan which can give us confidence in ourselves, but how much are we missing when we choose faith despite the what ifs? If we try to remain in control of all the things, we miss out on allowing God to do the miraculous!
A couple of months ago after we found out the Cleveland school district would be entirely remote, I immediately requested a meeting with her school and district personnel to explain what I thought should have been entirely obvious: Rylie canNOT do school remotely. It isn’t feasible at all. And the fact that the only ‘accommodation’ they provided was an aide who would assist her virtually. (I don’t need to explain why that is absurd, right?) The meeting concluded with the district explaining to me that there was basically not enough evidence (despite the obvious, and what is in her IEP) to approve a separate placement for her. I had requested separate placement which is an IEP term, because there was an alternate education program that serves kids like Rylie at United Cerebral Palsy, and they were able to still meet in person, while taking appropriate pandemic precautions. Over the next few days I began frantically researching and having conversations with anyone and everyone I knew that was knowledgeable about all things IEP, because I knew without a doubt that expecting Rylie to be educated virtually was not only impossible, but completely unfair.
After digesting much IEP, FAPE, and IDEA jargon, I cried out to God one afternoon, “You have to fight for me! This is all too much and it’s not right but I can’t just fix it. Please fight for me!” Shortly after I had a conversation with a friend, who encouraged me to call Disability Rights and helped me with another letter to send to the district. Days went by and I knew the letter was all I had left. I had to do something, move forward, continue to…fight. And yet something deep in my spirit was unsettled. I began to sob desperate tears of frustration and helplessness, and as I dramatically flung myself on the bed, sobbing tears of despair, I cried out even louder than before, “I NEED YOU TO FIGHT FOR ME!!! FIGHT FOR ME!!! IS SENDING THIS LETTER THE WAY YOU WILL FIGHT? BECAUSE I DON’T HAVE PEACE RIGHT NOW ABOUT SENDING IT BUT I DON’T KNOW WHAT ELSE TO DO!!!!!!”
“Be still, I will fight for you. Just be still.” It was one of those times where the voice of God was nearly audible to me. And yet still in my struggle to let it completely go, I questioned just how he was going to do this without me sending a letter basically stating that I was going to get a lawyer involved. (Even though I had NO idea beyond that actual threat how we could possibly pay for a lawyer) “Just be still. I will fight for you.” And I kid you not, moments later the phone rang and it was someone from Disability Rights. Now, I honestly had no idea what these people did or if they could be of any help at all, and I had even forgotten that I had done an intake assessment with them a couple of weeks prior. So the gentleman on the other end of the line asks me to explain what is going on. And honestly, I was reluctant because I thought it was going to be a complete waste of time. I mean, how on earth could someone just step in and help us fight the school district? Well, apparently this guy, because as it turns out – Disability Rights has lawyers who work for them to help people out with things including school situations where a child with a disability has rights that are not being met! After sending him all of Rylie’s evaluations, IEP, and other documents, he agreed he thought he could definitely help us out, and was able to coordinate an IEP meeting with the district and school personnel. And, just to give you some perspective: ‘Separate placement’ is not approved in a child’s IEP very easily. And I have heard that in the Cleveland school district especially, that it rarely happens. It basically means the district is agreeing that they are unable to meet the individual needs of a child with a disability and not able to accommodate them appropriately, therefore opting to send them to a facility that can adequately meet these needs. The district is then responsible for all costs related to sending them to this other facility and the necessary transportation to get them there. So it is costly, which is another reason it is not something they are quick to agree to.
Between the time I initially spoke with the Disability Rights lawyer and the actual IEP meeting, I stressed and struggled to remain confident that God was in fact going to come through and fight like he said he would. The day before the meeting, I was a wreck, my mind spinning with all of the things I should say, or wondering how I would defend my position and trying to practice all kinds of scenarios that could possibly occur. Then my wise husband reminded me, “God said he would fight for you. You need to cling to that!” The next day, I made a smoothie, pulled out all of my paperwork and notes, and took a deep breath to prep for the Zoom meeting, as the lawyer had said these typically take 2-3 hours to come to a resolution. Guess what? After about 45 minutes of the district representative asking a few questions to other school personnel for clarification, and allowing me to explain why I felt remote learning was not appropriate or possible for Rylie, she calmly said, “Okay Ms Huneycutt, I mean, I think Rylie would be best suited in a separate placement, so if you are in agreement…..” I looked around my kitchen as though I was trying to give someone else a look of like “What just happened here??….” but I forgot it was just me and the like 9 people in the Zoom square boxes on my iPad. I tried to quickly compose myself and hide the shock and complete surprise happening in my brain to reply with a professional, “Yes, I agree.” That was it. The lawyer was present at the Zoom meeting but said few words. His presence spoke louder than anything. “Just be still. I will fight for you.” I waved a polite goodbye as we all signed off, gently closed my iPad, and began to ugly cry. It was a cry of relief, love, faithfulness, thankfulness, and an emotion that I am still unable to completely articulate: when you have to literally fight for the rights for your child. Of course it is amazing when you have a victory, but the fact that you have to expend so much emotion and energy in the first place to advocate for your child’s basic human rights takes something out of you, and it is a deep emotion that I cannot yet put words to.
It was an experience of God’s faithfulness that has grown my faith immensely, and helped me to comprehend all the more just how much He sees. He cares. And even though the school district forgot Rylie, He most certainly had not forgotten about her. But I had to let go. Because I could have sent the letter and tried my best to fight with only my words but when I stopped to cry out to Him and hand it over, He was so very faithful to provide and fight for us. There was no ugly, drawn out litigation or battle of words at the IEP meeting even. It was almost as though God showed up to the district and told them how it would be. I mean, I feel like there is no other explanation for how smoothly the meeting, and their agreement to separate placement in less than an hour!
So you would have thought that come the first day of school, that I would have been confident in God taking complete control, and he has been SO faithful in everything else, that even in transporting her He is holding her in his hands. But, in my weakness, there I was breaking speed limits and swerving through lanes on I-90 because I still just couldn’t completely ‘let go.’ I was texting with a close friend a few days ago, telling her how anxious I was feeling about her starting at a new school, especially after her not being at home for the last 7 months straight, AND after the crazy summer she had medically it just makes me feel a bit anxious to leave her! “Let it go,” she said. I told her not to make me cry! “They are your words!” she said. (I mean technically they are Elsa’s words but…) Funny though, isn’t it? How quickly we forget? “Let it go” has become our motto for Rylie’s life. And to ‘let Jesus’ has been what we have fought to cling to. And yet, how many times have I typed or hash tagged that phrase, only to forget it when I needed to remember it most? My friend so gently reminded me, and she was right. It reminded me of the importance of keeping the promises of God close in our minds and hearts, and continuing to praise Him and speak truth over ourselves even in the midst of despair.
I cannot control all the things, and if I could why would I need Jesus? And even when things happen when I cannot possibly understand how Jesus could redeem it, he has truly never failed to!
And here is the really amazing thing about all of this – If it were not for the pandemic, and the school district going remote, it is very unlikely that I would have ever looked into separate placement. It is something that wasn’t even on my radar until all of this. Because of Rylie’s even more complex needs and our desire to have her monitored even closer than ever, sending her to this new school actually feels so much safer and accommodating far beyond what the public school system could have provided. It happens to be held in the same building where she has been doing outpatient therapies for the last 6 years, so we already know many of the staff, and the place itself just feels like a second home. They are so well set up to educate children with IEPs beyond what I could imagine! And it is definitely something I believe we would have had to fight a lot harder for if it were not for the pandemic. It has made me thankful and amazed at the way God has provided something for Rylie that I could have never possibly dreamed up on my own. He took a despairing situation in the middle of a pandemic where I couldn’t possibly see a good outcome, and blessed us with immeasurably more!!
Never has this scripture in Philippians been more meaningful to me,
“…do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:6-7
Christians quote this verse and throw it on everything from mantles to greeting cards. And yet, I am not sure that I have really absorbed or even believed it so much as I have through this experience. One of the verses my Bible cross-referenced this passage happened to be a scripture God has brought to my mind frequently the last few weeks: Ephesians 3:20-21: “Now to him who is able to do far more abundantly than all that we ask or think, according to the power atwork within us, to him be glory in the church and in Christ Jesus throughout all generations, forever, and ever. Amen.”
Amen. He truly did far more than I asked or could have imagined. These scriptures are so much more alive to me today than they were before. Thank Jesus for his never ending faithfulness, patience, and His steadfast love for all of us❤️
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