Our Every Day

Last night I sat down to mentally prepare for our oldest son’s developmental pediatrician appointment that I scheduled for today. I decided to write out a list of what we have been dealing with. As tears ran down my face and soaked the page, I wrote and wrote some more. At the bottom of the page I printed in caps: PLEASE HELP MY SON. I AM DESPERATE. I discussed at length everything with the nurse and doctor, and I think we have a plan of attack. I held it together after the appointment and all the way home, but now that I am reflecting back on the day I feel pretty beat up. He is a blessing. A joy. We just want him to be successful - whatever that means for him. ❤️

Four years ago, our oldest started private speech therapy. When the speech therapist mentioned to me about a PECS book, I was all over it. I balked at the cost of purchasing one, and since it *seemed* so simple to create one, I spent hours doing so. And it was a big failure. Undeterred I tried the next recommendation - a picture schedule! So I made picture schedules on a ring, picture schedules on a clipboard, picture schedules velcroed to laminated sheets of blank paper, picture schedules on foam core boards decorated in cheerful printed scrapbook paper, picture schedules created by the behavioral therapists at NCH... All of them flopped. But they - the experts I guess - say that picture schedules work wonderfully when implemented correctly. Our oldest has had great success with them at school. So after taking a few months off I am back to trying to find the best system that works for us. Or maybe I just living out the definition of insanity - doing the same thing over and ove...

Our oldest has really had a rough year so far. However I think the migraine medication is helping him to feel better in general. His migraine last week didn’t seem to be as hard on him, but it took a lot longer for him to recover - he slept quite a bit! He is having a sedated MRI in a few weeks so I am trying to mentally prepare for that - I know it’s going to be difficult for all of us. Tonight he was in a silly mood - I found him sitting between his bed and the wall with about 10 pillows and blankets piled around him. He grabbed my hand and said “Gordon?” And from there we named as many Thomas characters we could come up with. He was giggling when I couldn’t figure out what he was saying. Sometimes it’s frustrates him but it always frustrates me. I told Mike tonight that lately my heart has broken every single day. We have lots of communication and more words every single day but I still get so sad that he can’t just say what he feels. I can’t imagine how maddening that must be! ...

This morning at church I was observing a group of older gentlemen who were with a caregiver. She was attentive to them, and she kept a watchful eye over them, checking on them through the service. And just like grief does, it came out of nowhere and took my breath away. I could see my Gray sitting among them someday as an adult long after Mike and I are gone. I had to leave because I was bawling, and I couldn’t even explain what I was feeling to Mike. I was sad because someday Gray may very well be in a group home setting. But the longer I thought about it, I was hopeful because these gentlemen still were at church - they were involved in every part of the service. They were greeted joyfully by those around them. I was encouraged by the kind way their caregiver worked with them. Being a special needs parent is such a tricky thing and there are so many emotions to manage. I am glad today that I didn’t get stuck on just the sadness - that I could see past that to something hopeful. Maybe...

We spent the early morning hours of today in the emergency room. We knew something was very wrong when what we thought were migraine symptoms didn’t subside like they normally do and his breathing grew labored. When Gray gets sick, our whole household stops and every ounce of energy and attention is focused on him - which makes it extremely difficult with two other kids. Mike and I were up all ni ght monitoring him, and then decided enough was enough and took him to the hospital. They did a chest X-ray and swabbed for strep and influenza. We were shocked that strep came back positive. How long had he been feeling so poorly? And he couldn’t tell us! He. Couldn’t. Tell. Us. It absolutely breaks my heart. 😢 This has been our life for years now, and despite the progress made, I still feel like this just doesn’t get any easier. How does he feel about this? What does he think? I wish I knew. Maybe someday he will be able to tell us.

Our oldest likes to steal my phone and scroll through my playlists. Today after a rather chaotic ER visit for stitches, I was sitting squeezed in between two car seats in the third row of our SUV trying to keep him from fussing with his bandages. I had given him my phone to keep him occupied, and he kept returning to the Brett Young song “In Case You Didn’t Know.” He was doing some auditory stimmi ng and playing these lyrics over and over again while leaning his head into my arm: I can't count the times I almost said what's on my mind But I didn't Just the other day I wrote down all the things I'd say But I couldn't I just couldn't Coincidence???? I don’t think so. I think my incredibly bright non-verbal son found some lyrics that resonated with him ❤️ Of course, it made me cry 😭

I saw something yesterday online and I screenshot it so I could come back and reflect on it. It was posted by the church we attended when we lived in New Jersey forever ago. "Pray that Easter wouldn't be empty to you this year. Pray that instead of going through the motions of another holiday, you'd truly meet with God and find hope in Him." So I prayed that - a couple times yesterday knowing that like all holidays - they are rough. Not only does Mike work all of them, but our kids either don't understand or obsess about it to the point of making themselves cry. This year has been hard already. We have been dealing with ridiculous behaviors that have left holes in our walls, terrible migraines and a whole bunch of other stuff. In the past three weeks, Grayson has had severe strep throat that landed him in the ER, Grayson had a sedated MRI, Easton was sick twice, Grayson had to come home from school because of severe constipation, I had to take him to the ER agai...