Friday, August 29, 2014

Grace's Diagnosis: Or, What Cerebral Palsy Means

Grace turned 11 months this week. It is time to write about Grace's diagnosis. I have thought and prayed a lot about it; I fear ignorance, and I want to dispel fear. What people do not know, they Google. And internet search engines do not diagnosis people. {p.s. this is a long post}

If I had a quarter for every time someone told me how beautiful my daughter Grace is, or how she looks like the Gerber baby, or how she should be a model, Grace's first year of college would be paid in full. It's fact, not opinion. My daughter has beautiful eyes, long eyelashes, a perfectly round head with a cute chin, a button nose, a rosebud mouth, and the softest skin. The way she catches your eye and smiles; the way she laughs! When she was born, I couldn't stop staring at her or holding her. She is still so perfect.

She was born at 40 weeks, 2 days. A low risk, uncomplicated pregnancy; I pushed for almost an hour and a half. Her APGAR scores were 9 and 10, and her Moro reflex was perfect. We got released early from the hospital, which was a God-send. I couldn't sleep with nurses coming in every hour or so.

Around 3 months, we noticed she liked to keep her right hand fisted. The family nicknamed her "Little Lefty Baldwin" - but I read that kids do not prefer a hand until 2-4 years old. Will and I started to talk possibilities. We decided, if she was still clenching her hand, we would bring up PT/OT to Grace's pediatrician.

At six months, she was examined by three doctors, none of whom were conclusive about why her hand was clenching. She was moving her arm around, opening her hand occasionally, and responding well to tests. Her pediatrician prescribed PT/OT through a Louisiana program called Early Steps.

A month of evaluations, and she was in the system. Grace was assigned a therapist we called Ms. Lisa, and she was a wonder woman for Grace. She taught us so much too, and recommended us to see a pediatric physiatrist, Dr. Karlin; he attended Mayo for medical school, is triple board certified, and well-known for diagnosing hard cases. He also has cerebral palsy.

Dr. Karlin met with us, examined Grace, had Grace's bones scanned, and wanted to do a CT scan on her as well. Will pushed for an MRI instead, because if the CT scan was inconclusive, we would have to do an MRI anyways, and he wanted Grace to have the least exposure to the radiation.

On May 26, Grace's 8th month mark, she had her MRI. In retrospect, it was such a blessed day. I was not allowed to breastfeed her for six+ hours, and I was petrified she would be weeping from hunger. Quite the opposite - she got mad at me briefly, but was in quite good spirits for the whole procedure.

Later that day, we got a phone call from Dr. Karlin's office to meet him the next day to discuss Grace's MRI. Will and I felt a little trepidation, but Grace's symptoms never seemed serious enough for major concern.

Nothing prepared us for seeing the MRI.

In utero, Grace suffered a massive stroke. In an adult, it would have been devastating. But Grace's little brain is so elastic, and it already started to heal itself (my non-medical opinion based on how well she was/is doing/ apparent muscle weakness). Later, we met with a neurosurgeon, who said she would not need a shunt, which means there is no fluid build-up. This diagnosis is not progressive. Grace can only get better.

Grace has right hemiparesis cerebral palsy. This mean she had a stroke before the age of 1 (cerebral palsy), and it affected part of the left side of her brain, which affects the right side of her body (right hemiparesis). Her right arm, hand and leg are weaker than her left. The neurosurgeon also said, with intensive physical and occupational therapy, she should have full strength on her right side by age 5 or 6. She may need speech therapy in the future. She may continue therapy past 5 or 6.

There are still a lot of unknowns. There are still a lot of hope. Grace has unlimited potential! The doctors are amazed at her -- she was a difficult case to diagnose because her symptoms did not fit the mold. She is already doing things we were told she may never do, like crawl. GHB thrives because of her self-determination, and by the enormous love and support of her family.

I have resisted publishing my thoughts on Grace's diagnosis because the emotions are so raw. I'm sensitive to thoughtless comments, though, and after the beyond base tweet of Richard Dawkins that parents who do not abort their children with Down syndrome are "immoral" (and should just "try again"), I could no longer be silent.

No one chooses to have children with special needs (besides adoption): we are chosen. We are chosen, even when we are scared and feel weak and do not know how we can be the best thing for the child. Grace had a stroke in utero that just happened (so the doctors have told us thus far); I do not have any medical issues, or family history, and the pregnancy was healthy and low risk.

Staring at Grace's MRI that day with Will, my chest tightened, and I didn't believe what I was seeing. And Will, who understood better than I what we were looking at, only strengthened his resolve to make sure Grace gets exactly what she needs from us to thrive. He is certainly the best father to Grace, and exactly who she needs.

It is okay to be scared when your child is given a scary diagnosis. But you are exactly what you need for your child. I was scared - what if I did her exercises wrong? What if...? But when it came down to it, that was pride speaking. My comfort zone didn't like someone else sitting on the couch, demanding my time and energy, compassion and empathy.

Moreover, I've been amazed by the time and compassion given to us by Grace's doctors and therapists, both in New Orleans and now here in PA. They are teaching me as much as they are teaching Grace. They give me perspective, and they give me insights. I am a better mother and person because of their witness and encouragement.

Dawkins also said that autistic people should not be aborted because they contribute to society. Reader, you may be thinking, Why are you even engaging in these ludicrous ideas?

Answer: Because they exist and people are perpetuating them. The current statistics say that 85 percent of fetuses (that is, an unborn human being living within its mother's womb) with Down syndrome are terminated in utero. That is beyond unbelievable. For all the uproar happening about the horrific killings in the Middle East with ISIS, we need to put on our consistency pants and stop being so self-centered that we would rather kill a child than "burden" ourselves by caring and love him or her.

The burden of special needs children is a unique one, countered purely by the outpouring of love for the individual child. Yes, financial sacrifices are made. If you know a family with severe special needs, I think giving them financial assistance would be a beautiful gift. For some disabilities, there is also state-funded help (which does not match/ often go as long as private, but it is a start). But we cannot put a number on a child if they are already alive.

Sitting in the waiting room today, before Grace's therapy appointment, I witnessed children of different needs and their parents or caretakers. The love of these children is so apparent, and because of their disabilities, the parents give more love. In the face of frustration, love. Every day, we must choose love. There is no other path: we teach our children by example, and how to be the best version of themselves, and how to be kind and patient with themselves. Love overcometh; love spilleth over.

The question has been asked, "Would you change your child's diagnosis if you could?" But how could I change that reality about my daughter? Any more than I could change her sandy hair with the little curls, or her bright blue eyes, or stubbornness.

How could I take away her witness to the world - her chance to overcome, and learn that goodness comes with the struggle. She may cry during our therapy sessions: her Dad and me trying to teach her to use her right hand, to crawl and scoot, and to use her right side as she does her left. I am fully aware of her limitations: but they are not forever. Even if she never gains full use of her right side, she has already progressed farther than where she was at a few months ago. She is continually amazing us.

One day, I look forward to her using both hands to drink from a cup, or read a book, or hold on to a swing. One day, I hope to watch her running strong and studying hard. Her physical limitations are temporary; we will teach her love, virtues, curiosity, and about our God.

A good friend of mine has a son with autism, and she talked to me a lot after Grace's diagnosis. She told me how Grace's new needs take me off the motherhood hamster wheel, and will continue to give me a new perspective on how amazing my daughter is. I will continue to push Grace, but I will also be more tender. I will not take her for granted: I will be grateful.

Do not ever feel sorry for GHB because she has cerebral palsy. It is part of her; it is not her. The range of cerebral palsy cases is similar to Downs syndrome and autism - there is not a one size fits all solution.

I hope, by writing about our journey with Grace and cerebral palsy, to change the attitude that children with special needs are a burden. I hope to show the way a child loves a parent can open a heart more fully, a heart this writer tries to keep protected, until it bleeds onto the keyboard and words are formed. I hope to stop the ignorance that special needs children are more work than they are worth - because their life will change your life, and for the better. They are a gift to all of us - and especially me!


A few of my favorite blogs to share...
  • Sarah writes at WifeyTini about many things (language warning!), and quite hilariously so. She has a son, Henry, with spina bifida, and writes an awesome posts to "change the way we talk about disability in this culture":
I am not an expert on sociology, or language, or (least of all) people with special needs. All I know is that every day since we learned Henry would have spina bifida, we were conditioned to think the worst about his diagnosis. We were advised to terminate, by more than one person, seemingly because a life with spina bifida is so terrible that it’s better to not live it at all. Can you comprehend that? There is such a disconnect between the beautiful children I see who happen to have a disability, and the sorry, deformed, faceless nobodies that our culture makes them out to be. And the disconnect didn’t hit me — not really — until right after Henry was born. 
I was holding him, actually, when I got the phone call. It was a nurse from some county office, wanting to let us know that, because of Henry’s condition, we qualified for food stamps and other assistance (which we declined). 
“I’m calling,” she said, her voice dripping with sympathy, “because we hear you’ve had an adverse birth outcome.” 
What? I thought. He died? And then I realized she was talking about Henry. What the shit? I mean, he’s got some issues, sure. But adverse? A “birth outcome”? 
The thing about defining moments is that you don’t really realize they’re defining at the time. My response wasn’t one of righteous indignation. I didn’t deliver some Sorkin-esque speech. I said “Wow. Uh, no?” And then I laughed. Because it was ridiculous. I wasn’t mad, don’t get me wrong — I’m sure she was a very nice woman who was tasked with having a very uncomfortable conversation with a hormonal, post-partum stranger. I get that. But damn if what she said didn’t knock my socks off. So that’s how you see them, I realized. That’s how you see my baby.
Excerpted from her post "I smell an agenda..." You bet your balls you do.
  • Mary at Passionate Perseverance makes me want to have a coffee date with her every single day (which I can, though her Instagram!). Her love for her daughter Courtney is bubbling from every post, even ones chronicling hard days, and her witness is inspiring:
After a little back and forth between him and the students explaining all the medical procedures that have been done on Miss Courtney, we opened the floor to questions. Oh the questions I got. Medical questions, family questions and psychological questions. Questions about faith, freedom of choice/assisted suicide and day in/day out care of our sweet girl. This little impromptu class took over 90 minutes and it was fascinating. There was laughter, tears and even a few "I'm sorry's" which I asked them not to say.   
I explained that saying "I am sorry" to me about what was happening wasn't necessary. There is nothing for anyone to be sorry about. Miss Courtney belongs to God, always has, always will. Jerry and I just get to borrow her for a little while. She is a living saint and part of her job is to be a witness to the faithfulness of Our Lord who is always be by our side. He has been right here with us from the very first moments of her life in the womb.
Excerpted from her post "little miss sunshine update... every day is a gift..." 
  • Finally, Love That Max is a special needs blog about a boy named Max with cerebral palsy. His mom writes so eloquently about it:
So there's all the crappy stuff, and then there's the reality of Max. He is a really bright kid who's well aware of what's happening in this world (and who never lets his little sister put one over on him). He likes to learn, and picks up things quickly. The cp hasn't prevented him from walking or riding a bike. The cp hasn't prevented him from playing with trucks, coloring, downing ice-cream or doing all the other stuff little kids love to do. The cp has not affected his incredible determination, his spirit, his sunny disposition, his sense of humor, his fantastic attitude. Max doesn't yet know he has cerebral palsy. Someday, he will, but I'm not concerned it will change his perspective on who he is. 
If you don't have a child with disabilities, the cerebral palsy may seem like a tragedy to you. I'm here to say, it isn't. Do I wish he didn't have it? Of course I do. But do I wish that I didn't have a temper? Yes. Do I wish that Dave didn't have such trouble listening? Yeah. Do I wish that Sabrina was more patient? Yes. We all have our weaknesses, and while Max's may be more involved and more obvious, they're part of who he is. 
Cerebral palsy has not defined his life.
From her post "It's Cerebral Palsy Awareness Day and hello, world, my child is not a tragedy"

And these two posts on Downs syndrome: "Dear Richard Dawkins, You Are Wrong" and "A Different View: Three Years Later"


Happy [belated] 11 months, ma bebe! I am loving all your babbling; how vocal and definite your responses are to actions. You signal for "more" by slapping your left hand down, and you shake your head for "no."

Your smile is always the best part. You've started sitting up in your crib in the morning and after nap time, which also means you occasionally get your leg stuck between the bars (whoops!). You make me feel like the most special person in the world when we play together - you are so curious and fun! It makes my heart melt the way you get so excited upon seeing your Dad. You still love peekaboo, which is one of my favorite games too. I wish you'd let me hold/ finish reading the book during story times, but it is super cute the way you turn the pages yourself.

You love kisses and tickles, and I love giving them to you. You are ridiculously flexible. You love singing along to music, and are especially loud during mass (singing, you know, is praying twice!). I'm also glad you love walks, going on errands, car rides and snuggles, because we do that a lot together. You especially love when your Dad and I are both paying attention to you at the same time. You make every day a perfect treat.

We love you, Grace Harriet!

Sunday, August 24, 2014

Cooking At My Speed

The best part of going home is having someone else cooking for you. Specifically, my dad or brother John or sister Megan. They love to cook, and they are truly talented.

Tonight, Grace and I arrived home very tired. I promptly threw Grace in her crib and myself onto the bed (neatly made by husband, I should add!) until a delivery man rang the doorbell and Grace began to cry.

Fine, we'll eat dinner.

Grace had Earth's Best organic sweet potatoes & chicken, and then apples & plums; plus a generous handful (or two) of Happy puffs, which make her (and thus me) very happy.

I had one Chobani yogurt, a Kind bar, and a large tomato from our neighbor's garden. Yes, after consuming, though satisfying, I felt like I had missed the Dinner Train. Even Grace's dinner seems better than mine upon description.

Will worked till 8 pm tonight, and we took him dinner around 9 pm, and he said he expected to be at work for a couple more hours. And walking home, I realized, I put more thought into fixing Will's sandwich than I did my own dinner. Truth be told - my blood sugar was higher then - but it gave me a new project (because I don't have enough of those): meal planning.

Do any of you meal plan on a regular basis? I am usually so tired around dinner, I go the path of least resistance. Sometimes that involves baking. Other times, re-heating.

So here I am, at the start of a new week, in a household that needs me to go grocery shopping. What will dinner look like this week?
Monday: grilled cheese + avocado, tomato soup, red + green peppers
Tuesday: baked chicken, baked potato, vegetable
Wednesday: tomato, feta and quinoa salad (an old favorite!)
Thursday: [leftovers]
Friday: baked tilapia, rice, vegetable
Saturday: spaghetti + grass-fed ground beef in tomato sauce, vegetable
Sunday: [leftovers]
Dessert: the entire watermelon I impulse bought last week

Our main goal is to be healthy without eating anything that is going to weigh us down to blobs for the rest of the evening. I also write [vegetable] because Will and I usually eat different ones; he loves spinach salad, while I feel like, if I eat another leaf in the next month or so, I will deny my past, positive relationship with said plant. If I write a specific one, it usually means Will is not joining us for dinner.

Meal planning was much harder than I anticipated. I blame food aversions partly, and I suppose it does not help that my indecisive stomach is saying: AHHH WHY ARE YOU MAKING ME COMMIT TO FOOD RIGHT NOW??!?

That being said, I am excited to have a plan! I also fixed six hard boiled eggs for lunch this week. I'm working' it. What's next, smoothies?

Saturday, August 23, 2014

My View (vol. 20)

What I am reading: "18 Reasons Why Doctors and Lawyers Homeschool Their Children" by Kathleen Berchelmann, M.D.

This is an article, not a book. I was privately educated my entire life; Will was half-privately educated, and half-homeschooled (the ultimate private education!) from second through eighth grade. He loved it - it worked well for him. Before we got married, we discussed the possibility of homeschooling the children. I was extremely wary of it, to say the least.

I was hired last fall as a teacher for Memoria Press, for their online classical school, to teach U.S. History (6-8 grade) and AP U.S. History (9-12 grade). The school primarily caters to homeschooling families, and the more I learn about how Memoria operates, the more I think, this is way more manageable and possible! Plus, Will is an awesome teacher. He is patient, informative and always thinks of alternate ways to explain things. And us together? What a solid school!

Homeschooling is not a definite. When the time comes, I will enroll Grace in pre-school and see how she thrives. I am also in love with the Montessori school method, and would be very happy to enroll the kids in that kind of learning environment.

I did not have a bad experience in grade school or high school; but I didn't have the best experience either. I could have used more positive and personal attention from teachers, and less bullying from my classmates. I love how Dr. Berchelmann explains how their schedule works, what works for them, and how homeschooling has enriched their family life.

Besides, Grace already wants to read Will's journal articles:

Favorite eats: Kashi almond bars. Chobain yogurt. Fried chicken and rice (from The Feed Zone). Stawberries!

This week in history: Grace and I flew home yesterday to attend a funeral this morning of a very dear family member. Her death came as a complete shock. I found out via a phone call from my mother: I was sitting in the hospital cafeteria, waiting for Will to give him his dinner. Grace was in her stroller, hamming for anyone who caught her eye. I was in total shock while talking to Mom, and then began sobbing in the cafeteria after we hung up. One of Will's friends/ a fellow resident saw me and offered comfort and a chance for normal conversation to help me pull myself together before walking home. He also took Will his sandwich. I am very grateful for his kindness. Never underestimate the gratitude of comforting the sorrowful.

Also - Grace is a flying rock star. She is also a yogi and future ballerina. She didn't nap very well on the flights, but at least we arrived home in time for a short one.

I also began my online training for graduate school and teaching! Life moves pretty fast.


And for a laugh, this was me when my mother brought home tea cookies from Busken:

Prayers: Please keep my family in your prayers, and the soul of my mom's cousin.

Next week, I am going to: Have orientation with my students! Hire a babysitter! (Prayers for these too, please.) Grace has an evaluation for OT, and... it will be good to get home and really try to catch up on life, and all the Ignitum Today e-mails backing-up. This summer has been so, so busy, and I am glad to get some routine going. Hopefully Will and I can go play mini-golf too!

Wednesday, August 20, 2014

The Gift James Foley Gave Me

When I went upstairs this morning to tell Will about the essay I had read, I hadn't expected to start crying again.

I cried the first time promptly after finishing the last two sentences:

"If nothing else, prayer was the glue that enabled my freedom, an inner freedom first and later the miracle of being released during a war in which the regime had no real incentive to free us. It didn’t make sense, but faith did."

I was on our bed with Grace, and she giggled as I briefly cried, finished changing her diaper, put her down for a nap, and went upstair to Will's office.

I announced to him that I finally knew what I would write about for my Ignitum Today post due on Friday: an essay by James Foley, the American journalist beheaded by ISIS, for his alma mater Marquette University. It was written in 2011, after he was released from captivity in Libya.

He wrote about the power of prayer. He wrote about saying the rosary in his cell: the 100 Hail Marys on his knuckles; an Our Father between every 10 Hail Marys; how praying the rosary, like his mother and grandmother would do, helped keep his mind clear.

He prayed out loud with his colleague, Clare: "It felt energizing to speak our weaknesses and hopes together, as if in a conversation with God, rather than silently and alone."

He wrote about his conversation with his mother, and how prayer penetrates hearts, minds, and across continents:
“I’ve been praying for you to know that I’m OK,” I said. “Haven’t you felt my prayers?”
“Oh, Jimmy, so many people are praying for you. All your friends... Your brother Michael loves you so much.” She started to cry. “The Turkish embassy is trying to see you and also Human Rights Watch. Did you see them?” I said I hadn’t.
“They’re having a prayer vigil for you at Marquette. Don’t you feel our prayers?” she asked.
“I do, Mom, I feel them,” and I thought about this for a second. Maybe it was others’ prayers strengthening me, keeping me afloat.
That vision of the community of saints -- I couldn't shake it from me -- and how one person's faith can ground reality into another person. I thought about saying prayers with Grace before bed, and night prayers with Will before going to sleep. I thought about how much I struggle with getting to daily mass, and the constant distractions posed to each of us in an attempt to dissuade us from praying more and more - to lessen our communication with God.

There is a violent, religious war going on in the world. People are attempting to shape the world in their own image - an image of what they imagine Heaven should be, and are instead creating Hell. People are being beheaded, killed, raped, starved, exiled, beaten and tortured.

I am at home, bemoaning the laundry that has piled up, and that I need to clean up the downstairs before our babysitter candidate comes over for her interview. I know the work I do is important - taking care of one's family and home is a noble duty. But I need to seek more solitude and joy from the act of praying and the love of Scripture. I read when I "have time" and pray "when I can" -- but they should be more ingrained in our life. They should have more priority seating. My God is worth glorifying, and my faith is worth strengthening.

James Foley - may the angels sing you home, and may God welcome you into Heaven. Thank you for your words. Thank you for your witness. May the Lord continue to bless your family, and may they find solace in your life, heart and faith. Thank you for reminding me that the freedom of religion is not only a legal protection, but the freedom to practice my faith in both public and private. The freedom, as Blessed John Paul II said, to do what we ought.

Saturday, August 16, 2014

My View (vol. 19)

What I Am Reading: Agatha Christie's Appointment with Death

Favorite eats: Chobain yogurt. Rice chex. Peaches. Strawberries. Raspberries. (Oh my!)

Morning time with my Alfalfa sprout
This week in history: Grace officially started physical therapy! She was also interviewed by Early Intervention, as she qualifies for the state program as well. Feeling very please by all the help she is receiving. Grace is also having minor separation anxiety, and is becoming exceedingly more vocal. On the plus side, this includes her waking up from her daytime naps and singing in her crib. Just adorable! 

Will had an atrocious shift schedule this past week, but he's off it now {for the weekend!!!!}, and he was able to make it home in time to attend mass with us yesterday for the feast of the Assumption. I have now received all my history books and am starting to really prepare for classes!

I also built this:


Prayers: For Pope Francis' trip to South Korea! There are four million Catholics there, and I am loving following all the pictures, Vatican radio updates and news articles. Prayers for Asia and the Church there as well!

Next week, I am going to: NYC with the family + my visiting sister for Grace's first trip to the Big Apple! I am also going to interview part-time babysitters for when I start work in September, and finally put my office together (and not just let the boxes sit there).

Waiting in the hospital cafeteria for Dad!
Have a great weekend, y'all! I know I am enjoying a break from constant vigilance, and am helping Will to clean and organize today! (Or is he helping me?)

Relaxin' to the max.
I think the beautiful weather calls for a walk as well!