I tried to explain to someone recently that having a rare child is both the same yet uniquely different than having a typical child

The typical mom and the rare mom cannot believe their girl is 16 years old

The typical mom is afraid of her 16yo daughter getting her license and discovering boys

The rare mom mourns just a bit that her child will never drive and breathes a sigh of relief that her daughter won’t be in a car with a 16yo boy 🤣

Both the typical mom and rare mom of a 16y daughter watches #gaurdiansofthegalaxy together and sing along to the music. Both the typical and rare 16y daughter tells their moms they have horrible singing and please stop

The typical mom of a 16y daughter worries about her breaking curfew. The rare mom of a 16y puts her to bed at 8p and relaxes with a nice glass of Pinot Grigio

Both moms worry about the future. Both moms worry if their 16y daughter will ever be independent and live on her own

The typical daughter will. The rare daughter will not

Both moms are amazed about what their daughters have accomplished and worry about moments in life where they might fail

The typical mom of a 16y is helping her make plans for after high school. The rare mom is figuring out her life on how to support the 16y that will soon lose the support system of the public schools

Both the typical mom and the rare mom lose sleep at night and worry about their 16y daughters future

Both moms are so in love with their 16y daughters

Both moms need their villagers

And yes, this rare mom gets overwhelmed and sometimes is envious of that typical mom that will experience all those firsts with their typical 16y

This rare mom also knows that this unique child she has been given fills her world with such joy, moments of fantastic and laugh out loud experiences that while this isn’t the life she imagined 16 years ago…she also cannot imagine her world without her rare girl

Which is how I know that both the rare mom and that typical mom parenting isn’t all that different

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.

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?

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.

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.

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.

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.

*******

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: