This is a tale of an emotion filled Monday and a man named Al, who represents all the pain in our lives. Intrigued? Please, read more!
What was probably over a year ago, Jane’s physical therapist suggested that we get her a stander, which is a supportive piece of equipment that will keep Jane in an upright/standing position, while allowing her muscles to bear weight and stabilize. It sounded great so we put in a request to our local regional center for this stander. After 2 years of services, I’ve learned that our regional center is so helpful and a God send of resources, but things can often take a really, really long time to process.
6 months later and Jane was fitted for a few different standers. 4 months later and we were told that her equipment should be arriving “any day now”. Yesterday was that day.
Monday is Rich’s day off so we were all home waiting for delivery man Al to show up with our long awaited piece of equipment. At 2pm Al arrived with our fancy new stander. As he wheeled it in to our house, I had just a few thoughts:
1. There it is.
2. It’s pretty big.
3. We probably need a bigger house. Or at least bigger doorways.
4. Wow, we could really use hardware floors right about now.
5. Oh, it’s purple.
6. Is the purple supposed to make it cute?
7. Did I choose purple at some point over the phone?
8. Al is tall.
9. It looks so very, “special needs”.
Of course, all I said was, “Hi Al, come on in!”
Rich came in from the other room carrying Jane like a daddy gorilla or something. He was hesitant. I even had to give him a, “Come on in here babe!”
Al was there to fit Jane into the stander and show us how to use it on our own. Immediately as Al began to strap Jane into the harnesses I could see that my sweet husband was concerned.
Months ago, as Jane was fitted for potential standers, I sent a picture to Rich. I thought she looked like a very big girl and it was encouraging to see her in an upright position without having to hold her up by myself and take a picture at the same time. Rich felt a billion other things. One being, “Oh my gosh, that’s what it would look like if Jane was standing on her own!” The second being, “Jane is not standing on her own”. On this Monday, the same thoughts returned.
I’ve had my fair share of emotional revelations. In fact, I usually am the only one having these emotional revelations. For all the above reasons, the stander became Rich’s vice.
As Al adjusted our daughter’s little frame into the heavy piece of equipment, I did what I always do in very strange special needs situations, I joked and talked a lot and remained super grateful. I learned a while ago that if you act like, “Oh yes, this is super normal and I love it!” You can actually hold it together for a few hours. If you ever let yourself realize how not normal it is for tall Al to be manipulating your daughter’s body in your living room on a Monday, you will lose it.
And that’s the great conundrum of special needs life. Or maybe just life as a parent. Or life as a person who loves anything. Rich explained it well to me later over our dinner date.
“I know this is helpful, and I’m really grateful that it’s going to help. But, I hate this so much.”
We know how fortunate we are to have the equipment and resources we have for Jane. We are eager to watch her thrive with the services provided. No one has to tell us how fortunate we are and how great it will potentially be for Jane to have this new device. It does not change the very deep emotion that accompanies it. The emotion of reality. The reality that this is equipment for a child who cannot stand. These are services for a child who needs great help to do very simple things. And the child is our daughter.
The reality is we now have our first piece of special needs equipment sitting in the corner of our house. And it’s pretty big. So large in fact that I decided to name it. Her. It’s a her. And she is named Tina.
So much to process on a Monday in September, and as Rich put it, you just want to be mad at someone. You want to blame someone for why your daughter is sick, and why there is a large stander named Tina interrupting your day off. But you can’t blame anyone, because it’s no one’s fault. So for a minute you just blame Al. But Al is actually a pretty nice guy, and really helpful. And Al is here to take care of business. Al is not to blame.
We often blame Lennox Gastaut syndrome, what Jane is said to have, which is not a person at all. One time Rich went to the gym and lifted heavier weights than he ever had before, all in the name of spiting Lennox Gastaut. That’ll show it. I’ve done so many high intensity workouts since having our last daughter, I’m sure subconsciously thinking that if I sweat hard enough I can defeat the disease plaguing her.
There have been plenty of reasons (and there will surely be more) as to why we can cope and blame and be shocked and angry, and I think it’s important to let those things unfold on their own. There will be moments of victory, hope and thankfulness, but it’s ok to be sad. To be mad at the “Al’s”, who are simply innocent bystanders. To scowl at Tina in the corner of the living room, while we learn to use her, adjust her to fit Jane, push her around the house and find the perfect spot for such an industrial piece of material in our home.
Someone experiencing pain most likely does not need to hear that you should always look at the bright side, find the silver lining and be happy. Its more likely that they need permission to feel all the things. Possibly all at the same time.
So here’s to the journey of mixed emotions. Thankfulness and sadness. Hope and disappointment. Confusion and excitement. Mornings with Al and Tina and evenings of dinner dates all on the same Monday.