I possess many titles: wife, mom, advocate, runner, Bruins fan, lover chocolate and Parrot Head. I believe you can conquer any challenge in this world with family, good friends and wine. I write about most of that and more while keeping my sense of humor in this life I never expected.
Last week this memory popped up on my Facebook feed and I had no idea what I had written way back in 2013.
I searched and found this post where I was trying to explain to a four-year-old Bridget (Boo back then) why she had to work so hard to make the tiniest progress and how sorry I was that I am the one that causes her the pain, procedures and therapies. Yet I never once in those four years, have I regretted one moment of this unexpected life.
Unfortunately, for Bridget, turning 16 was not sweet. It has been nine months of struggle and after a lot of work, acquiring not one but four more diagnoses and adding more doctors to her list of specialists.
Which brings me to this moment, where that letter to Bridget needs to be updated. *Tissue warning ahead.
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!
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:
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.
(Un)Diagnosed and still okay 