|[Image: Great-grandma, center, reads to Tara, left, and Tonia, right, age 2]|
Monday, April 12, 2021
Monday, April 5, 2021
|[Image: Cups of coffee, side by side. |
One reads: NONCOMPLIANT DISABLED PERSON
The second: UNGRATEFUL DISABLED PERSON]
Monday, March 29, 2021
1 minute read
|[Image: a phone sceen with Facebook, Twitter and Instagram apps visible]|
Monday, March 22, 2021
|[Tonia, left, and Tara, right, reunited with our Cabbage Patch dolls, Jennifer and Rainiya)|
We played elaborate games of pretend with our dolls. Birth trauma was not off limits. Nothing was off-limits:
"Here! Sissy! Sissy! she says, going through the great tunnel, to get a new baby that's gonna be mine."
"There. She's sleeping."
"Yeah. She's just preemie."
"...Because she got a cold and she coughed on her. And she didn't even cover her mouth. She didn't even cover her nose, she just pachooed right on the baby, and didn't blow her nose so it just runned all the way down her neck, and all the way down to her sister! And all the way down to her toes!"
"'Oh, my precious little honey darling,' says her grandmother. This'll be her grandmother. 'She's so precious...'"
"She got sick. She needs to get lots of rest. She's in the hospital....the same room where you get the baby out. And I have a baby crib right here, all fixed."
"Why don't you go have a seat, Mother? Right here, and lie down. And watch your baby...and stay with your kid?"
Monday, March 15, 2021
|[Image: Elsa sings Into the Unknown from Frozen 2]|
Friday, March 12, 2021
Monday, March 8, 2021
8 minute read
We are so happy to hear that you have been helping your loved one in their recovery. Support means so very much, and it is so needed. Also, we understand that you are at a bit of a disadvantage, having never experienced CP within your own body. We have, and we would like to share some insights to help you help someone like us. Someone we all love.
First, we’ve never had the [this particular] surgery. But we have had numerous surgeries between us and we know how brutal recovery can be. Having a support system (you) there is so vital for your loved one. We cannot imagine having to relearn how to do things with an essentially new body - new legs - after 20+ years of accomplishing tasks another way. (And with a brain that still has CP.)
Do you remember when your kids started walking on their own? They were babies. Maybe toddlers (as we were.) But they did not just get up and start walking one day with 100% confidence. It took a long time. A lot of small steps. They stood holding onto something. They cruised around it. You walked with them, holding onto their hands for a time. And you were always there for them, right?
|[Image: A baby boy holds an adult's hand as he walks]|
You didn’t say, “No, babies! No holding onto that table! No holding onto Mommy’s hands. If you are going to walk you need to do it all by yourselves.” That wouldn’t be fair to them, would it? To skip the confidence-building that always having you there gave them. To know you would catch them if they fell. To know they could stand unsteadily. Then cruise hanging onto furniture or you. To always have your arms to toddle into.
This is not to suggest that your grown loved one is a baby or that she has regressed in any way. But she is learning something essentially for the first time. And keeping one’s balance is tricky business with CP. She needs to know she’ll have you there, to build up her confidence so that she will feel safe enough to try balancing on her own. Even though we are adults, we still need all the steps to exist on the way to a goal. We cannot be expected to jump from A to Z without stopping at B, C, and so on.
Spasticity or not, your loved one (our loved one) still has CP. And CP means they have a body that does not always cooperate with what they want it to do. It is not a matter of willpower. No matter how they want to succeed in rehab (hint: they REALLY do), they are also always contending with CP. Which means muscle weakness. Which means they might have trouble engaging just the muscles they need to use on a given task. Which means as hard as they work to coordinate their body and their movement, it may not always work according to their plan, or best efforts.
Their balance may improve as their strength builds. And one of the best ways you can help is by simply being there physically. (Sometimes, when we are in a scary situation - like a stair with no handrail - we ask family members to “just come and stand here” in front of us. Sometimes we need more than that. Sometimes we need a hand or a lift.)
And doesn’t everybody sometimes? You don’t do everything by yourself, right? You don’t know how to do all the household repairs all the time, right? You need help sometimes? From your hubby? From your sons? From your loved one we are speaking of? From professional repair people? The thing is, that’s okay. It is 100% okay to need help.
One of the greatest gifts CP gives is the ability to know ourselves and what we need. It means we are always thinking: “Is there a way I can do this independently? What can I try? Is this safe for me to try on my own or do I need backup?”
It allows us to recognize our own limits. And knowing our limits helps to ensure our safety.
If you were in a situation where a rock-climbing professional told you that you needed to descend a sheer rock face, but you could not have any help or equipment, would you do it? Or would you say, “This is really unsafe. I need some equipment and a trainer to help me.”?
Our loved one is recognizing their own limits - needing your hands for right now - perhaps needing to try things other ways - is not them giving up. It is them being smart.
When we are in a situation that our brains read as “too much” for us to do physically and there is no one to help? We freeze. It’s a survival instinct. While we freeze, though, our minds are always working: “How can I move this massive thing from point A to point B? I might have to put it on this cart to help me move it.” So we get the cart. And sometimes, just having the cart there, allows us to get “unstuck” and we don’t end up needing it at all. We just need the visual cue that something is there, should we need it.
Because this is the case, starting with your physical presence, your hands - or whatever your loved one deems necessary - and then easing away once they feel comfortable and consents would help immensely. It would help their body unfreeze. It would be the first step in being able to tackle a balance task independently (eventually).
Having CP means it takes a lot of concentration for us to move our bodies (or to keep our balance - standing still is hard). If they are worried about falling or about not having you there physically, their focus is split. And they need all their focus to be on the task at hand, right?
We hope you know we have only the best of intentions with this letter and we respect your loved one very much. We count on this person as our closest friend. You are so lucky to have them in your life. We hope this helps you better understand how it feels to be them.
-Tara and Tonia