Wednesday, May 27, 2015

One Year of Cerebral Palsy: Thank Yous

Yesterday, Grace turned 20 months. It was one year since her MRI. Today is one year since her diagnosis. One year since her specialist, Dr. Aaron Karlin, confirmed that she has cerebral palsy.

I've been way too busy the past few days/week, so I am taking a little break from the blog... but I need to say thank you, publicly, and I need to say a lot of them.

Thank you, Ms. Lisa, Grace's LA Early Steps therapist. Ms. Lisa, you are such a mama bear for your clients. Thank you for advocating for Grace. Thank you for introducing us to the doctor who diagnosed her; thank you for talking to us about EVERYTHING; thank you for understanding; thank you for loving Grace and believing in her.

Thank you, Dr. Karlin - you saw Grace, you agreed to do an MRI over a CT scan (at Will's request), and you pushed this process along so quickly. This allowed us to have all the answers and pre-requisets we needed to move seamlessly into therapy in the new state. You cared, and I felt that as we stared at her MRI, not quite believing what we saw.

Thank you, Meg. Meg is a friend I met through NOLA Kappa, and it was such an unexpected friendship. Thank you for reaching out to me after the diagnosis, especially, and talking to me about all the emotions and possibilities there.

Thank you, Andrew. Andrew is a very dear friend from my college days, and is currently a pediatrician resident. He was one of the first people I told as I struggle(d) to wrap my mind around what this means for all of us. It is such a blessing to me to have a friend who knows more about CP than I do, and can ask me questions - vs. me always feeling the need to rush in and explain. Our friendship means so much to me, and it is a huge blessing to have your guidance when it comes to Grace and her diagnosis.

Thank you, Heather. My college roommate/ best friend/ Grace's godmother has yet to meet her, but she is Grace's #1 fan and lit candles all over Europe, praying for GHB.

Thank you, friends-at-large. There are A LOT of you!! Friends near and far, silver and gold friends, and friends whom I am blessed to know better down this life road. Initially, I really struggled with telling people about Grace's diagnosis. I'm not ashamed of it - but there was so much to process. I like knowing, and there are no easy answers with CP. Sometimes, even typical questions can hurt when the future is so unknown. But all I know is a mountain of love and support from y'all: people who are always asking about Grace, cheering her on, and loving her. It means the world to me, and I am especially grateful for the virtues of friendship.

Thank you, blog reader-friends! Some of you have read since my internship in Washington D.C./ the the beginning (cough, Rachel), and most of you have jumped on this crazy train at various stops: college, reporting, RCIA, working for my family business, nannying, dating/engaged/married, moving, baby #1 and #2 ... the fun doesn't stop! I've appreciated how many of you reach out with questions, comments and love. As a Sheenazing nominee two years running as "most under-appreciated blog", I hope you all know how much I over-appreciate all of YOU!

Thank you, family. Grace is definitely spoiled with all the love and affection she is given; she has also figured out how to call people, and is known to call her Aunt Katie (does she know my passcode??) and FaceTime her Nana.

Thank you, Will. My partner in marriage, child-raising, fun and life: he is the best Dad to Grace. After she was diagnosed, I was really scared that I would be unable to be the best caretaker for Grace. I am not medically trained nor did I remember anything beyond basics about the human body from my high school anatomy and physiology class, and I am terrible at discipline. He told me that didn't matter: I had to be the one to take care of Grace. I had to stretch her, move her, take her to therapy and make sure she got what she needed. No excuses, no overthinking - just action.

He (rightly) reminded me that nothing had changed. Grace is still our daughter. No matter if she's typically developing or specially developing, our time is going to be consumed with our kids. A daughter with cerebral palsy doesn't make us super parents or better parents: it cements that we are parents, and we have certain obligations and duties to our child to give her the care she needs.

And mostly, thank you, Grace Harriet. You are the best daughter: lively, loving and lovely. I am so very honored to be your mama. Watching you grow, excel, overcome and laugh is my greatest joy.

... I'll leave it at that, for now. I have so many posts I've started, so much I need to share about this journey. We're lucky that Grace's very serious stroke was discovered so soon, and we're able to provide her with the most support possible. The future is still very unknown, and that is okay. That is what makes this life an adventure.

As Ms. Lisa said, "You can cry about it or you can move."

We Baldwins are movers*. Thanks for shaking along side us!

* Fine, some of us cry. No names.

((These movies are before her diagnosis.))


  1. Always cheering for Grace... and you! You are the best mama to Grace :) <3

  2. Such a great post! So happy for Grace's progress. You're too kind to give me a shout out. I've loved reading your blog - it updates me on your life in words and pictures. Thank you for being so diligent with the posts. Hope all is well in PA, sister-friend!