March 25th is Cerebral Palsy Awareness Day

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Here's a few pictures of my little warrior:

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Isolation - Special Needs and COVID-19

Parenting is hard. I knew it would be. But I never thought it would be like this. For Theo's toddler years I pictured daily walks to the park, play dates, spaghetti messes, going to the library for story time, tantrums in the middle of Target, jumping in puddles, daily hugs and kisses, and the joys of potty training.

Our daily, weekly, and monthly schedule keeps us extremely busy and, at times, overwhelmed. Theo has therapy, Toddler School, and doctors appointments almost every day of the week (most days we are double or triple booked). We are constantly driving 40 minutes west to Toddler School, or 20 minutes north to PT, or 25 minutes south to OT, or 2 hours southwest to the hospital in Peoria. We are interacting daily with therapist, teachers, doctors, and other Special Needs parents, but I've never felt so alone. 

We don't have any family or friends nearby. It's so hard to even justify leaving the house because it's hard to get Theo packed up, in the car, and to our destination before we have to give him meds or feed him. And neither of those task are easy. Feeding him requires a lot of space, supplies, and time (it takes 30-45 minutes to feed him and then he needs to "rest" for about 30 minutes before we can move him). It causes a lot of anxiety.  Do I have time to feed him before we have to leave? Should I feed him when we get there? What about his meds? Is he going to need his gabapentin while we are gone? If so, then we need to pack a syringe in an ice pack.

I have a hard time leaving the house unless it's for Theo. 

I can barely take him to the grocery store without having to time it out with his schedule. And even if we can make it work (time-wise), I can't get much because we can't use a shopping cart. Theo has to sit in his stroller and I can only get what can fit in my reusable shopping bag.

If we are on the road then things get a little more complicated. We need to either find a Starbucks or a Chick-fil-A, since they will let us set up camp for an hour AND they won't give us nasty looks about it. Even in 2020 a lot of restaurants are not set up to accommodate a large stroller. And what's even more bothersome is that some places aren't willing to accommodate us. It would be so much easier (and a lot less time consuming) if we could just roll through a drive-thru and I could just throw some fries and chicky nuggets at him and we could be on our way.

[Tag we got for the stroller. It doesn't help. People don't take us seriously because Theo just looks like a big kid in a stroller, not a handicap kid that HAS to be in a stroller.]

Needless to say, we don't go out much. Trying new restaurants is hard because we don't know if the stroller will fit. And forget trying to find a babysitter. You see his schedule? It's a lot and can be a bit overwhelming. We do have a very reliable (and awesome) babysitter, but she lives far away, is in grad school, and has a daughter to take care of too.

My family had been planning a reunion in Idaho this summer where we would rent a huge house outside of Yellowstone for three days. Sounds fun, right? Yep! It does! I haven't been to Yellowstone in a long time. It would be fun to go back and spend time with my extended family. I can't go. There's no way. I can't fly by myself with Theo. I don't know how I would carry his carseat, his diaper bag, his rolly suitcase with all of his medical supplies, and our luggage AND push him through the airport in his stroller. I don't have enough arms. Even if we were able to get to the house outside Yellowstone, what would we do then? I can't ask people to make their schedule around Theo. "Oh, hey guys, can we stop ever hour so I can feed Theo or give him meds?" "Looks! It's Old Faithful! Can we stop here for an hour so I can feed him?" "Okay, so we need to leave now or Theo will get hungry in the car and we'll have to stop and feed him." That's a lot to ask of people. "Please have your life revolve around me and my child, since it's all about me anyways, right?" So, leaving the big house would be too hard, so we would just stay at the big house all day. We flew all the way to Utah and drove hours to Idaho, just so we could stay inside and not do anything? I can do that for free here.

I'm a burden. We are a burden. It's not fair for me to ask other people to accommodate us. 

It's hard for us to make the trip to see family and friends and I can't keep hijacking their summer vacations and asking them to come and visit us here in Chicago. I hate this. I hate being such a burden on people. I use to be so independent. 

I knew being a mom was going to be hard. I knew being a mom of a child with Special Needs was going to be hard. But it's the isolation that is really starting to affect me. It's getting harder as Theo gets older. It's easier to just stay inside and avoid all the problems that come with trying to go anywhere.

But hey, the timing of this post is perfect, right?

As of 5:00 PM today the entire state of Illinois is under a "Stay at Home" order  due to the COVID-19 pandemic. 

All schools, bars, restaurants, and "nonessential work places" are shut down until April 7th (or longer). All gatherings over 50 people are banned. So, that means Theo's Toddler School is shutdown for the time being AND all of his therapy services (through EI) are canceled. I am a strong supporter of this. We need to "Flatten the Curve" and this is the best way to do it. I'm not saying it won't be hard, it will, but if we all participate in "Social Distancing" then we can help save lives.

 It's already hard to leave the house and now we are being asked not to. 

Win-win, right?

We actually started our own "quarantine" on March 10th when Theo got sick and I canceled all of his appointments. I'm looking forward to warmer weather so we can at least go on a walk around our neighborhood.  

Stay home, stay safe, stay healthy.