Vacation was great. Everyone had so much fun. We made some once in a lifetime memories. Took amazing pictures. It was the best. But now it's back to reality. And boy did I have a nice shock back to reality.
Earlier this week, I had a meeting with Finn's new service coordinator. Finn has aged out of the Help Me Grow program and now the Franklin County Board will look after him. With this meeting we basically just discussed where Finn was on the wait list for the waiver program that Ohio offers. There are 2 different levels of waivers...the level 1 waiver gives families up to $5,000 a year to help assist their kids who have a diagnosis. That money can be used for anything that the child needs: adaptive equipment, adapting your house/car, nursing assistance....Finn is currently 3300 on the wait list and he has been on it since he was 6 months old. The next level waiver is called the IO waiver. This is the big one. The amount of money you get a year depends on how much care the child needs/requires. It can assist families up to $500,000 a year. This waiver is great bc it stays with the person their whole life while they live in the state. Although the drawback is you can't get this level of waiver unless someone dies or moves out of state. Finn is currently 5300 on the wait list for that one.
I was asking the service coordinator what I can use the money for...and she mentions the things I listed above...and I say "well I won't really need to hire nurses for finn". In my mind I'm thinking finn is fine. He's not bedridden, not hooked up to machines...so why would I need a nurse? And she responds, "well he's just going to get bigger. When he's 16 years old you will need help lifting him and stuff." And that just kind of shocked me. Like it didn't even occur to me that Finn will get bigger. I mean I hope he continues to grow and get bigger, but I never pictured him as a teenager, an adult. Maybe it's bc the past 3 years of my life has not changed...I still change diapers, I still get up in the middle of the night, every night, I still bottle feed and spoon feed, Finn is still immobile. Sometimes I forget that he's 3.5 years old. Some days I think I live in denial...this is just a phase ...that he'll wake up one day and just start walking and talking. Then for me to have to think 10 years into the future and face that our routine may never change is hard.
Now don't get me wrong. I am so in love with Finn. He is my favorite person on the planet. He is the sweetest little boy I know. And he is making great strides in physical and cognitive areas. He amazes me every day. He is the strongest person I know...way stronger than I will ever be.
So it was kind of jarring to have that meeting. Then a few days later I am at Finn's OT appt...discussing what I said earlier. And she says, "you can use the nurses to be professional babysitters" (since I could never just hire the neighborhood babysitter) "let's say you have more children and you guys want to go to their dance recital or something and don't want to take finn. They would be the ones who could stay at home with him." Wait--what??? Why on earth would I ever want to exclude Finn from a family night? Omg. Just thinking of even considering that puts another crack in my already broken heart. I have accepted the fact that finn will go thru periods of feeling left out at school but I'll be damned if he ever feels that way at home. Not if I can help it.
This was an emotional week for me. Vacation is definitely over.
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