When Bridget had her bilateral ankle surgery, I realized I still maintained my OG of CHB skills. Experience really does make this unexpected life easier to navigate. As I looked around the hospital I began to see the first timers versus those of us who have been around awhile.Continue reading
Author Archives: firebailey
Once again, Bridget teaches me
Part of my decision to do the Achilles Tendon Lengthening surgery was the fear that if I didn’t do the surgery now it would mean Bridget would not walk later. I was worried about the post-op, the recovery but that did not weigh as much as what happens if because of toe-walking Bridget becomes wheelchair bound?Continue reading
When I don’t ask the right questions
I have not always made the best choices for Bridget. I do not always listen to the experts. It’s not that I do not value their opinion. They are knowledgable but they don’t live this unexpected life. Sometimes I am proven correct, and others….
Well I have to admit when I should have asked better questions.Continue reading
Out of all the therapies…
Throughout her life, Bridget has been exposed to just about every type of therapy designed by the medical professionals.
Speech therapy is probably one of the most frustrating for families. Unlike ABA, PT or OT, Speech therapy takes years to see any progress. With the others there are goals that have mini-steps, so while they do take time to see progress the patient and caregiver get mini-wins along the way.Continue reading
Just Say Yes
Like most parents, I struggle with taking care of myself. I was talking to a friend last week and she relayed a conversation with a childless friend that said she should just “do what makes her happy”. At first frustrated, how could this person without children tell her to put herself before her family. Did they not realize that it is not that easy? We cannot just “do” something because we have other responsibilities that take priority!
Until she finally said yes to herself.Continue reading
Some days I wonder
I feel like I should give the usual caveat that I love Bridget, before you read this post. However, unless you are new to this blog, you know my love for my child is all encompassing. Yet there are days I wonder. What would our life look like if Bridget was as typical as her sister.
It’s been a week, for which I am thankful
This week was different than most, I had a glimpse of Bridget’s future. I had to recommit myself to looking to protect her future, while enjoying those mini-milestones she works so hard to acquire. With that in mind, this week I am thankful for:Continue reading
A glimpse of the future
Last week was April vacation week for Bridget. In our family, just because the kids are on vacation that does not mean the parents get a week off to go to Disney. With on. child in college and one child that is just as expensive, vacation week looks every other week, except the kids stay home and watch too much TV and eat way too much junk food!
Our live-in nanny is currently living her best college life, as she should be! Since unlike most 14-year olds Bridget cannot stay home unattended watching videos on YouTube and eating junk food. Since I cannot take the week off (my paid time of is saved for her doctors appointments), I got a glimpse of what our life may be like in 8 years when she is no longer a cared for by the school system.Continue reading
It’s been a while, let’s share a glass
I took a little hiatus from writing this blog. I was second-guessing myself, wondering if Bridget could read the words I write, the exposure of living with a child with a disability (the good, the bad and some days the downright ugly tears), would she be hurt? Would she be embarrassed? Would it negatively affect her in anyway?
When her sister was a teen, she asked to approve anything I wrote here or on social media. To this day, I respect her wishes.
I had a moment of personal ethics/crisis/I’m not sure what when it came to sharing about Bridget. Then a very good friend said to me…Continue reading
For the Love of Music
I have never been into plays or musicals. I love music. I always have it playing in the background. I try to sing to it, until Bridget tells me to stop because I am “not good”.
Bridget has always loved music. On her iPad she will zoom past the dialogue and stop like a dime when the music and singing starts. She loves it all: Grease, any Disney Movie and the Barbie movies. If there is a music, Bridget is having a good time.
Fast forward through the disaster that was Covid-related and Bridget has found a new hobby.Continue reading