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.))

Why I #StandWithRand

Whatever your politics or thoughts on the man, Sen. Rand Paul is correct in opposing a renewal of policies in the USA PATRIOT Act, and filibustering an extension to end NSA spying.

The fourth amendment of the United States Constitution is

The right of the people to be secure in their persons, houses, papers, and effects, against unreasonable searches and seizures, shall not be violated, and no warrants shall issue, but upon probable cause, supported by oath or affirmation, and particularly describing the place to be searched, and the persons or things to be seized.

Cornell Law explains:

The Fourth Amendment originally enforced the notion that “each man’s home is his castle”, secure from unreasonable searches and seizures of property by the government.  It protects against arbitrary arrests, and is the basis of the law regarding search warrants, stop-and-frisk, safety inspections, wiretaps, and other forms of surveillance, as well as being central to many other criminal law topics and to privacy law.

Friends, countrymen, lend me your eyes. Our rights and freedoms are as important as our security. We cannot promote freedom abroad when we violate freedom at home.

It would be one thing if the government was procuring a warrant (probable cause to investigate approved by a judge); no, they have the ability to search our privacy and seize intimate information. Even if you have nothing to hide, you have no reason to share what is yours and yours alone.

We are not safer because of these measures. Our liberties are watered down, diluted to the point that defending our rights becomes controversial! This is absurdity.

In 2013, when Paul was filibustering the PATRIOT Act again, The Daily Beast published "Why You Shouldn't #StandWithRand" by David Frum. He wrote,

Paul's filibuster ostensibly dealt only with a very remote hypothetical contingency: targeted killings on American soil of Americans who present no imminent threat to national security. Paul insisted that all the harder questions be taken off the table. He had (he said) no issue with a targeted killing on American soil of an American who did present an imminent threat. He avoided the issue of the targeted killings of Americans outside the United States - i.e., the actual real-world problem at hand. 

Instead, Paul invoked a nightmare out of a dystopian future: an evil future president shooting a missile at an American having coffee in a neighborhood cafe, merely on suspicion, without any due process of law. 

I think we can all agree that such a case would be pretty deplorable. It is also far-fetched.

The same month this was written, this happened. Four Americans killed by drone without due process. Maybe the president wasn't drinking coffee, and I don't think he is personally evil - but the ability to kill a person by drone is evil. We already do this to non-Americans - is it really so far fetched? Does the picture drawn really matter? In the end, liberties - put into place to protect us against government infringement.

This overstep on our liberties is nothing new. John Otis, a lawyer, is said to have inspired the idea of the American Revolution from a three-hour speech he gave against illegal searches and seizures. In February 1761, John Adams explained the power of James Otis and his oration:

But Otis was a flame of fire!—with a promptitude of classical allusions, a depth of research, a rapid summary of historical events and dates, a profusion of legal authorities, a prophetic glance of his eye into futurity, and a torrent of impetuous eloquence, he hurried away every thing before him. American independence was then and there born; the seeds of patriots and heroes were then and there sown, to defend the vigorous youth, the non sine Diis animosus infans.* Every man of a crowded audience appeared to me to go away, as I did, ready to take arms against writs of assistance**. Then and there was the first scene of the first act of opposition to the arbitrary claims of Great Britain. Then and there the child Independence was born. In fifteen years, namely in 1776, he grew up to manhood, and declared himself free.

If you value your rights; if you believe in due process; if you're against warrantless spying and arrests, #StandwithRand.

* translated from Horace, "Not without the gods is the infant courageous."
** the writs of assistance were court orders that authorized customs officers to conduct general (non-specific) searches of premises for contraband. The exact nature of the materials being sought did not have to be detailed, nor did their locations.

Zippety-Doo-Dah

The excitement around here is palpable. Post-shift studying at its finest/ lamest:

I am done with classes at the end of this month; I am taking a break from grading to share that we are doing fine! ::waves::

Will rocked in his in-service exam and is currently experiencing multiple EM rotations in a row - which is a real treat because most rotations are EM/ off-service rotation/ EM, etc. He likes the continuity. This also means we're able to take him a meal every so often! No good deed goes unpunished, however - after the enthusiasm of seeing Dad, both girls refused to smile for me...

Oh yeah, look at that sweet ride. Our new umbrella double stroller! I love it - it's compact when folded, easy to use, and both girls fit into it. It's especially great for short trips, like going to therapy.

Grace is doing really well in her therapies! In speech therapy, she's saying more animal sounds and car/train sounds when she sees a picture or hears a train or car. At her neurology appointment on Friday, she delighted the neurologist by says "oo oo oo!" for the stuffed monkey a few times. She has an app on our iPad called "Starfalls ABC" that is a wonderful, wonderful resource and interactive game. It is a wonderful blend of sounds, words, pictures, songs and activities. Definitely an app she can grow with as well! (Recommended by her first therapist, Ms. Lisa!)

In occupational therapy, she's doing well with her distal movement - moving her right arm more from the shoulder than proximal, by the hand. She cannot purposefully hold or let go of an object, so we are working a lot on that. She can get frustrated, but does really well using the whole arm to knock down a tower, push a coin into her piggy bank, or knock a puzzle piece off the board. She's also resisting a lot less, which is fantastic.

We stretch and massage her limbs, and she's very limber right now. Physical therapy is also going well. She loves pool therapy and does well at transitional walking/ weight bearing when she agrees to participate without getting frustrated and pulling away. It can be hard to watch her struggle - but seeing how far she's already come is motivation to keep pushing and encouraging her. Her right leg and foot is definitely more affected than her left, so we're toying with the idea of a soft orthotic... then again, her progress in a few months may not require that. It really is a waiting game, in some capacity. She has the strength and ability to walk... but she's just not ready.

Laura, our concerned citizen of the world, dazzles us with her smiles and babbles. She is our sweet baby and I love spending so much time with her. I've loved watching these two interact as well - Grace is the loving older sister who tries to put Laura's binky back in her mouth (or eye) and will cover her with a blanket. Sure, on the floor Laura might resemble a stool and Grace might try to sit on her - but all in all, Grace is very gentle with Laura and always happy to see her.

By the way, Laura is already TWO MONTHS OLD. What.

Must finish lecture now. I need three more slides, and then I'll take another turn with Laura (Will has her), who is not particularly happy tonight. Shhhhh. The fun never stops around here, huh?

My oh my what a wonderful day!

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Third Time's the Charm

Tomorrow is my third mother's day. We'll go to mass, get crepes, go to the park, maybe play tennis and generally enjoy the fact that Will and I are both off work for the day, and are able to enjoy our two sweet babies.

I've been under the weather and grading like mad, so I don't have a lot to say today. I would like to share a poem and a few pictures as a general reminder of how beautiful life is, even when blurry from busyness. So thankful for reasons to slow down.

"June Light" by Richard Wilbur

Your voice, with clear location of June days,
Called me outside the window.  You were there,
Light yet composed, as in the just soft stare
Of uncontested summer all things raise
Plainly their seeming into seamless air.

Then your love looked as simple and entire
As that picked pear you tossed me, and your face
As legible as pearskin’s fleck and trace,
Which promise always wine, by mottled fire
More fatal fleshed than ever human grace.

And your gay gift—Oh when I saw it fall
Into my hands, through all that naïve light,
It seemed as blessed with truth and new delight
As must have been the first great gift of all.

I'm the luckiest mama, and that is worth celebrating.

{Happy mother's day to all women with children on earth and children in heaven.}

We Survived (And Then Some)

Will is done with night shifts for TWO WHOLE WEEKS, cha cha cha.

And I'm just over here, remembering that I have one more quiz, one more homework assignment and one more paper to grade. I stayed up late the last two night finishing up all the quizzes + papers turned in, and I'm also finishing up this week's lectures... so yay.

I also had a study sesh with my AP students because the AP US test is this Friday covering all of U.S. history... I drank a lot of water to push through the twentieth century. Cold War be complicated! We'll have another one tomorrow night - so crazy nervous/excited for them!!

[Any AP test-takers out there? My husband's small Catholic high school did not offer them; my medium sized Catholic high school did. Thoughts on it? I'm all for testing, but it seems to becoming more intense and needed, vs. as an extra bonus before college. Or maybe it depends on specific colleges?]

After class yesterday, we did a serious cleanage of the first floor. It felt SO GOOD to have help + the windows were open because it is super fine outside. We've been having playdates on the porch in the evenings and they are quickly becoming my favorite time of day.  I love that we have a porch to play on with the girls, and that Grace enjoys being outside so much.

She wants to be in her swing all day long; she'll sit by the open door, trying to push the screen open so she can crawl to the swing and reach upwards. It is adorable.

But, I was prepared to give up that swing. For the past month, I've been looking for a new place to rent. We love the location and the space, but cost of living is too high, especially in comparison to other places in our area. When negotiations with our landlord were less fruitful than hoped, I decided we were moving, period.

Yesterday, I looked at the most wonderful house with the girls. It's a quick walk from the hospital - under ten minutes, so Will can still commute by foot. It's spacious, new appliances, gas heating, and a really nice space - the rent, of course, cinched the deal. We were moving, period. I started to move forward into negotiations, filling out the forms, getting pay stubs, etc. when I noticed that the house I so desired was in a different county.

I called my Dad, who confirmed that a mere three block move would put us in an entirely new county. The county line, apparently, is right by the hospital. I was crushed momentarily, and then (sort of) rallied.

County matters to us because of Grace's Early Intervention therapists. If we moved to a different county, she'd have to get re-evaluated and assigned all new therapists. The hassle is ridiculous, but more importantly, the bond is real. Grace loves her therapists, and they love her. It took her a while to get used to and trust them, and because she does, they can push her harder and get better results. When she does not know or trust the person working with her, it becomes a power struggle, and no one leaves therapy happy.

Grace's therapy schedule matters more than reasonable rent + utilities. That's my big girl lesson of the week.

I'm tired and a little crabby. Will's home more this week, which makes me happier. The girls are getting bigger every day - Grace is becoming such a toddler. She walked with her cart today during OT, and the way her face lights up keeps me going. Laura is the sweetest.

Three more weeks till summer. Survival mode.