Tommi is a month into online school with Connections Academy. For the first couple of weeks he did his schoolwork during the day while I was at work. Then he started getting migraines when he would sit at the computer for any length of time. Migraines so bad that he would cry and moan in pain and be nauseous for hours. So he has decided he wants to do his work with me in the evenings so I can help with the computer part of the work – so he stays up late, sleeps in, does who knows what during the days and at 8pm we go upstairs together and do his schoolwork. Do I love that? yes and no. He has good grades because I’m right there, reading with him and asking him questions and helping him get things done. But it does take a dedication from me that I wasn’t truly anticipating. It is my hope that as we move through this year, I can get him to start doing at least part of his work during the day when I’m not home. Our next stop is the eye doctor.

We’re also almost a month into Tommi taking no medication aside from medicine to help him fall asleep. Tommi has taken medication for ADHD for almost 10 years, and medication for anxiety for at least 5 years. We’ve tried so many meds, thrown the dart at the dartboard of medication and dosing more than I ever knew was possible. Medication for mental health issues is really such an experimental science. Let’s try this…….have we ever used this medication……we could do this combo……maybe we need to increase the dose. Our doctors have been amazing on the medication trail, but it’s usually a “let’s see what happens” decision and we never truly know if we’re making the best decision possible. Taking him off the meds almost a month ago seemed an easy decision. He’s in a safe place during the days, no large crowds of students in the hallways or teachers he can’t effectively communicate with. Our psychiatrist was really open to the idea and agreed with giving it a go….finding a new baseline and rebuilding from there. Brad was encouraging, and I think amazed that our psychiatrist was willing to go forward with no meds. Todd typically follows along on whatever I think is best. And Tommi was all for no meds. Since we stopped meds, I have been keeping a daily journal of Tommi’s behavior and emotions. I don’t document a lot, just rough patches, things he struggles with, the anxious moments; but also the calm moments, the positive changes, the laughter we’ve seen. I was super impressed two weeks ago when Tommi went to the Purdue football game with us and sat there the entire evening, playing his phone but also clapping to the school song, cheering when Purdue scored and talking a smidge to the guys sitting in front of us (who, btw, were super glad they sat in front of a mom who thought to bring a roll of paper towel to a football game to wipe off our wet seats!). He even told us at the end of the game that he wants to come back to the other games! This is Tommi med-free! In the last month, I have witnessed a big change in Tommi. He is happier, he is more interactive. He comes downstairs when I get home in the evening and he stays downstairs with us and the dogs throughout the night. He talks to us. He makes jokes. He laughs. He eats. He willingly goes upstairs with me at 8pm and does schoolwork with me. He still curses like a sailor and he still has a mighty temper – but those are not my worries when it comes to Tommi.

I’ve been a little sad this week as it’s Homecoming week at Noblesville Schools and there have been some fun posts on Facebook of Tommi’s teachers from elementary and 6th/7th grade having homecoming fun. It makes me sad that he’s not in that in-person school setting. That he doesn’t have that teacher/student and student/student interaction and the fun events of school. But it doesn’t make Tommi sad. So I need to just have my moment and move on.

The world of mental health/illness is much like that merry-go-round on the playground (you know, the old rusty one painted in the primary colors that your friends held onto one of the bars of and ran alongside of until they finally jumped on and you both spun around on so fast your head was literally spinning when you finally made your way to the safety of the ground!). There are days when we get on and the ride is slow and gentle – like your grandma was the one pushing the merry-go-round. There are days when you are flying so fast, but laughing so hard that you can’t see the world as it’s flying past you because of the smiles and laughter that fill the space around you. There are days when you’re the one running along, trying to push the merry-go-round for your friend, when you’re just trying to keep up and make them happy. And there are days when the meanest bully on the playground spins you so fast that you fall on your face. But no matter which merry-go-round Tommi and I are on each day, we’re on it together.

A few weeks ago, before he went off meds, Tommi and I had a real row one evening. We were supposed to be going somewhere, he was having a moment of no confidence and nothing to wear and complete irritation and I was making it worse by consistently saying “come on, we have to leave. Let’s go.” And in those moments of Tommi yelling “I’m ugly, my life sucks and I hate being in this family and I just want to die” I made a statement that I’ve had in my head before, but I’ve never ever said it outloud until that day when I said it outloud to Jackson. Tommi didn’t hear me say it. But Jackson did. And God did. And I immediately felt horrible for having said it. For giving life to those thoughts/words. And I carried that with me for 10 days until I got to talk to Brad and those words, the sorrow, the guilt, the anger flowed out of me and into the safe space Brad creates for me. And Brad made those words ok for me to have felt, thought and said. He reminded me that I have the toughest job on the planet – parenting…but not only parenting…but parenting a special needs child. And I am not the first, nor will I be the last, that would utter words of despair toward/about their special needs child. He asked me what God would have said to me had he been in the room at that moment…and I told him I thought God would be disappointed with me and would think I wasn’t a good Christian. And Brad immediately and firmly disagreed. He reminded me that when Jesus was praying in the Garden before his crucifixion, he asked God – his father – to take this cup from him. To not make him complete this task God had handed him. And that God said no. God heard his cries, heard his overwhelming fear, heard his heartache, and yet God said no. I know this is hard. I know you deserve better. But I will not take this cup from you. And Brad made me hear that God would say the same to me in that particular hard moment and in every hard moment. God has the master plan. He knew Tommi was coming into this world. He knew that Tommi would have many struggles. He knew that Tommi needed me and that I needed Tommi. And He knew that even in the dark days, the yelling days, the days when I want to throw in the towel and say “I give up” that He will remind me that I am enough. That Tommi is enough. That He will fill us with grace and love and help us find a way to continue to put one foot in front of the other and keep walking forward, even if it’s with baby steps. Mental illness is hard. But with God’s grace, Tommi and Todd and Jackson and myself will keep moving forward. That’s what families do. Thats what our village supports us to do. That’s what God wants us to do.

Dear Lord, Hold my hand when fear threatens to overwhelm and disable me. When I feel inadequate, insignificant or discouraged. Give me the strength to keep going, the courage to stand up for what I believe in, and a desire to give you nothing less than my very best. Give me faith that conquers fear. Help me to be prepared to endure everything with patience, while joyfully giving thanks.