As the pages of this blog have slowed down over the last couple of months, it was not without good reason. My son came off of two substantial illnesses that left him in PICU for 17 days total and when he came home, his body had much healing to do. His body is healing more and more each day and we are hopeful that soon, he will be able to attend school again with his classmates as his lungs are healing and his immune system grows stronger.
However, the challenges my son deals with do not stop with his physical body. Though his physical ailments are many, he has always struggled with various emotional issues. Anxiety, sensory processing disorder, OCD tendencies, inability to track social cues with his peers, hyperfocusing on his preferred topics, flapping; just to name a few.
This area of our life is not something I have shared with many, but I feel the message I have received through this experience is something others could relate to. The journey over the last nine months for our family was a pilgrimage of sorts. Over the course of last spring and this past summer, I was aware of certain behaviors and uncontrollable emotions Hayden was trying to process. I alerted our vast team of physicians and recruited a few new ones. What I share with you here in just a few paragraphs, is something that took months and months to confirm and is not something to be taken lightly. After hours of tests and interviews and parent questionnaires, Hayden received a diagnosis as being on the Austism Spectrum, having ADHD and also an anxiety disorder. None of those things were a surprise to us, but more of an explanation as many, many pieces of a puzzle we had been working on for years now, finally came together and we could see a bigger piece of the picture.
If I may be brutally honest (which is one of my favorite past times, mind you), getting this news sucked. I struggled a lot. And for a while. How in the world could this be fair?? Not only does Hayden have to deal with immense physical issues that are very complex and interconnected with one another, here he is having to deal with this new Spectrum diagnosis and anxiety that is off the charts. Couldn’t it just be one thing or the other?? Either JUST physical or JUST emotional/ASD? How was it fair that he had to deal with both things?!
But soon I realized, I wasn’t upset for him. I was upset for myself. I was the one who was having to deal with it. I was the one who had to add three new doctors to the color coded dividers in my three inch “Medical” notebook. I was the one who had to set up his weekly counseling sessions and find the money to cover the sessions – not to mention the cash only doctors we were now seeing. I was the one who had to relearn everything – how to talk to Hayden in a way to get through to his brain so he could process what I was saying, how to set up his room and work station so he could function better, I was the one who had to order a whole new batch of books online and spend my time reading and googling methods of therapy. Hayden’s life, quite honestly, did not have to change that much; he just got to sit back and reap the rewards of mine and my husband’s efforts. Whoa – the nerve! (*Disclaimer here: for our local friends, Hayden is not aware of this newest diagnosis, so please be mindful of that when talking with him. We plan to talk to him about it when he is ready and we are equipped to share with him*)
I am still in the acceptance and healing process of receiving this news. However, the Lord keeps bringing back to me a song I love. (Not to harp on Francesca Battestelli for the second post in a row….but her musics speaks to me!) There is a song, “He Knows My Name,” that I just love and that was a big part of career changes God walked me through a couple of years ago. The lyrics of the song, so powerful to me, were:
“Make no mistake, He knows my name; I’m not living for applause. I’m already so adored; It’s all His stage. He knows my name….
He calls me chosen, free, forgiven, wanted, child of the King, His forever, held and treasured. I am loved. ”
It just hit me one day. If that’s how I KNOW God feels about me, doesn’t he feel the EXACT same way about my son? His son? If God knows MY name, then surely He knows HIS name, too. So what is all the fuss about?
We see this verse a lot: “‘For I know the plans I have for you’, says the Lord. ‘They are plans for good and not for disaster, to give you a future and a hope.’ Jeremiah 29:11.
Yes, God has wonderful plans for my son. That, I now realize and I know that through our family’s challenges, God has a plan. Not an okay plan. Not a decent plan. Not a “that’ll do, I guess” plan. But a GOOD plan.
But y’all, Jeremiah 29:12 says, “In those days when you pray, I will listen.” Bam. I read that and felt the Spirit convict me. Throughout receiving this news about Hayden and dealing with all of these new troubles, I have not been praying like I should. Instead, I did as I aforementioned. I worried about my three ring binder!!
My hope for myself and for my son is that as we walk a path that is unknown, that we will learn to lean on Jesus as our first line of defense. I don’t know about you, but nothing in this world makes much sense to me these days. But Jesus. He is everlasting.
This post may speak to no one. Perhaps this is just a post that catches everyone up to date on Hayden’s newest health issues. But if you feel the Lord speaking to you through these words, let Him. Hear Him. Talk to Him. He will listen.
Beautiful. A wonderful reminder to all of us about who our first line defense really is in this world.
Thanks for allowing me to be part of the journey!
I feel so ashamed of my petty complaining, when I read your post. Praying that God will provide the strength to continue your journey. You are an amazing family.
Johnna this was yet again a beautifully written post. I’m sorry Hayden and your family are having to deal with these newly diagnosed problems. However, you are so right when you say “God has a GOOD PLAN.” Hayden is a Miracle beyond Miracles. The fact that he is alive, functioning and learning is God in motion. Hayden is going to accomplish great things in his life and one day you are going to look back and say,”Why did I worry? God has had my son in his hands this whole time.” We don’t understand why this is the journey that has been chosen but God is in charge. His plan is perfect. We don’t always agree with his plan or even like his plan but we can pray that he help us through it. And more importantly…he WILL!!! Love you and miss you.
I love your words, and I love HP so much
It has touched me for sure. Thank you for sharing your life and heart again and allowing it to bless ours as well. Love you