A Mom Epihany : Why so resistant to home schooling my child wth Ehlers Danlos Syndrome?

I think I just figured out why we have been resistant to homeschooling. We have/had a vision of what our daughters life would be like and by pulling her out of school, it is announcing that her disability is debilitating. That she cannot just "get better" and that we have to plot a new course. These are not bad things, in and of themselves, but I think we have been holding hope that she would just be better one morning, and her shoulders would be fine. In a way, homeschooling has been a flag that we have lost that hope. I know that is not the way to look at it, and I understand. It was just a bit of an epiphany this morning.

I feel like it's the right course and I am ready. I have to talk to my husband more, and then my child, and then the school. We may ease into it. We may wait a bit longer. We'll see how it goes, but if my husband seems resistant, I can understand that it isn't homeschooling he is shying away from, but the idea that his eldest won't be able to do the things that she wants to do. That her world will be modified. Again, I know that modified is not bad and that she can have a full life. I am not saying otherwise, just saying that I feel like I understand something about myself and my husband that I may not have realized, previously...and I feel like that's a good thing to understand.

So far, our child has not been able to stay in school for a full day since last Easter, when her shoulder dislocations started occurring every day. She did much better at home over the summer, increasing strength through PT and experiencing 4 days at a time without dislocations. Now that school is wrapping up week four, she is back to frequent shoulder dislocations and increasing pain/severity.
A blessing in disguise of home school would be that it would make it much easier for her to continue physical therapy. While we do not want to take her out of her social opportunities, the laws in our state allow for her to attend some classes at school, which may help alleviate that concern.

I'm pretty sure that parenting is never as easy as we all suspect it could or would be, and with special health considerations, the road can be bumpy. What we're learning as we go along, is that as long as we hold each other up and keep traveling down that road (walking, wheeling, assisted, or other), that is the key. We won't give up.

The other day, my daughter was in a lot of pain and her spirits were as low as they could get. She expressed that she didn't believe in blessings because she didn't think a higher power could possibly be looking out for her.  Wow, that stopped me in my tracks. My poor girl, in such pain, and I couldn't fix it. I could support her, say I'm sorry, offer her comfort and love and help to get stronger, but I can't fix it. That is hard for her, and it's hard for me, too. I do think that God, if you believe in that sort of thing, gives us what we need and He must see something in our family that indicates a strength we don't understand. Maybe that's naive, and maybe I'll be joining my daughters disenchantment in a few years, but for now, I feel a blessing in realizing that modifying the path and plotting a new course may just bring about some wonderful opportunities. While it's sad to step away from the idea of what life looks like and turn toward another vision, I suspect that in doing so, we will all be rewarded with happiness, success, and joy in ways that would not otherwise be possible.

So, while we may have been looking at home schooling as a letting go of hope, I am seeing it in a new light today. Today I see it as a better chance, and if that isn't hopeful, I don't know what is.

Bilateral Custom Support Vest has arrived - Ehlers Danlos Syndrome posterior shoulder

Well, it's finally here! After many weeks of waiting, back and fourth measuring, and more weeks of waiting...Hooray! We worked with the fantastic people at Scheck and Siress (Angela and Arnold) to come up with this hopeful solution for the ongoing bilateral posterior dislocations that occur multiple times each day. The vest was designed so that my daughter can put it on and snug it up herself with straps at front of each arm and on each side of rib cage as well as a zipper front. It was designed with as much breathability as possible, though it is still somewhat hot, heavy, and constrictive. It needs to be somewhat snug and firm to be supportive, so it's a good mix.  The bottom photo shows two inserts that sit inside the vest (you cannot see them from outside). They are a firm plastic that help sit right behind the scapula, in hopes to prevent some dislocations. These have been custom molded to fit her back, to make them as comfortable as possible.  They are removable, as well, and the velcro can be taken off and put on the front if they were to be placed on the back of the vest for comfort, for any reason.  Obviously, if we did that, they would not provide as much help, but it's good to have versatility.

We have been to many doctors and this is or current "last hope". No one has a better idea for her, so we can pray that this really helps. Day 1 didn't go great, but getting used to a new brace will always take time to adjust to. Our hope is that this will help her with ongoing good posture and proprioceptive (spelling?)  input to aid in her muscles holding those lose joints together. I hope and pray that this will allow her to do more. It's too soon to tell, however, so I will have to come back and update you in a few months. Please let me know if you have any questions. I know the people at Scheck and Siress said they have made similar devices for one shoulder, but this is the first bilateral that this team has made.  They seemed to have thought of everything and they really did a fantastic job.
As far as bulk, it is very streamline for a product like this, but it does look a little "football player" mode on a young teen. My daughter opted to just wear it over a cotton shirt without trying to hide it under sweaters, and more power to her. She's one brave young woman.