Dylann is doing great. I can't believe Thursday I can say it's three months post op! She's walking almost all day long in her KAFOs with short breaks and some use of her walker. We are doing twice a week physical therapy to work on regaining her bending ability in her knees that she lost while being casted and to start strengthing her hips and thighs. We have a long way to go but she's making great strides! I'm so grateful for my work that has supported me in working from home close to full time. I have a PCA who helps Dylann while I work but allows me to be much more available at home and it is helping make everything feel much more manageable. Being able to see Dylann more over lunch times and before and after work has managed to move me up the ranks to "her favorite" again. A place daddy has held for a better part of a year. :)
Dylann has to sleep in her tall braces all night which I was very concerned about initially. She actually is doing fairly well with that. It's only been a few nights I had to cave and removed them so we could both get some sleep. Her right foot has been super super sensitive since surgery. Her MD said it was probably nerve stretching. We are finally seeing some improvements there where she will allow some touching of it without screaming. She refused a pedicure with me last week, her favorite thing ever, so I know she's still not fully recovered. Doc said it would take time.
Next steps are to continue with lots of therapy, X-ray in March here, then return to Philly in April for a week long affair. She'll have some outpatient visits and then outpatient surgery to remove the pin in her hip and the plate in her knee. Sounds like it's same day procedure so hoping that sticks. She's already very agitated when we talk about going back for that visit. Her resiliency is inspiring and I learn from it daily! Also she has the strongest biceps I've seen in a 4 year old. It's hard to see here but she has a big bump!
Alright, so here's my vulnerability post for the day. I debated sharing this but I think it sheds light on the multifaceted things that come up for us. Most of the time I feel like I got this figured out, things are going fine. Until I realize maybe I don't lol. Maybe there are hard days even when I don't realize it.
I lost it today. One of the hardest things when you have a child with special needs is going in public. It's so full of emotion that it really takes all the strength possible to be educating others on her condition, or trying to let the stares not bother you and being thankful she's still too little to notice or trying your best to ensure she experiences everything I would want a 4 year to and trying hard not to be sad when there are things she just can't. Frankly it also is a lot of energy with finding special places to change her braces when she has to use the restroom and building in extra time to support her independence in getting places on her own. It can be a lot.
I honestly have probably been asked about her circumstances 400 times in 4 years. I truly do welcome people to ask questions. I prefer that over stares. It gives me the chance to share her diagnosis and experience and to brag about what she's overcome from what we were initially told. I've been asked about her in a number of ways: "what happened to her?" to "did you break her legs?" to "OMG! why is she like that?". Every time I smile and say my same lines. I've debated getting shirts that explain things or at least say "she has AMC" or creating cards that explains everything and I could just hand them out and not talk. But, so far I patiently tell her story and smile. For 4 years.
Today was different. I couldn't tell you why. I was in a good mood, nothing out of the ordinary. I take Micah to karate class and Dylann wants to come with. People are nice and inclusive to her there so she tags along and watches him and plays. When I get there a father asks me why she's in braces. I do my usual reply explaining her diagnosis and her treatments ending with my favorite punchline "and they said she'd never walk but look at her now."
The fathers mother (grandma) walks over and says "but, will she ever be normal?". Yep, game over. I snapped. I snapped at this 70 something year old grandma in the middle of karate class who I know had no ill will behind her question and I very loudly and rudely said "SHES NORMAL NOW!". She actually surprisingly looked unfazed and said "but I mean, will she ever be normal, like walk without braces?" I'm like " I didn't realize that was the definition of normal."
People stared at me and I immediately felt guilty and I walked away. I managed to ignore the man at the State Fair who was loudly telling everyone how slow she was walking and creating a line. I managed to politely respond to the many times I've been asked if I broke my daughters legs. I managed to ignore the lady who came up to me at Cub when Dylann was in her first cast telling me she'd pray for us so the horrible things that were done that led to her cast wouldn't happen to her again. That one actually stunned me into silence so I might have responded if shock hadn't taken over. 😳🤔. Nope, the grandma in the middle of karate class is where I decide to snap. It wasn't my best moment. Still feeling guilty 5 hours later.
I'm thankful for my mom support group. Tip to any mom with kiddo with newly identified special needs, find a mom support group. Mine immediately came to my guilt rescue and all had done the same thing at some point.
Moral of the story... well probably a lot of things.
One, I'm going to have to apologize to her next week 😒.
Two, as strong and with it as I feel most of the time, I have moments like this. They aren't pretty. I'm human so expect others might do the same. I'm giving myself grace on this one.
Three, I'd encourage those reading this to ask questions when you're curious to those around you but be mindful of the approach. They probably have a lot going on. Things are tough and we want to protect our kids at all costs.
Four, no I didn't break her legs.
Alright, time to watch shameless from yesterday!
