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!





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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"

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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!




10 comments:

  1. Grace is so dear. I'm glad you have had such excellent medical care for her along the way! And you are absolutely right: diseases and disorders never define us. Grace is simply a person, a marvelous little human who happens to have this difficulty. She's not really "different," any more than someone with allergies or eczema or the flu is made "different" by their diagnosis. I hope you are able to communicate that to everyone you meet, and that more and more people will understand that each soul God creates is equally precious. :)

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  2. <3

    I'm glad you were finally able to share your story with the blog-world - that you will share all of Grace with us! This is so beautifully written, and you are the best mama for Grace!

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  3. Thank you for sharing, Julie.
    My goodness is she ever adorable!

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  4. This hits close to home in ways I haven't made public, but I thank you for your words. Especially about being chosen. That just reframed things for me. Praying you have the support, courage, comfort your family needs as you work toward Grace's best.

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  5. I don't know what to write here that I haven't already said to you... I'm so proud of you for finding these words? GHB is amazing baby? Owning a disability is the first step to owning a disability? (I know that one through personal experience) Have I already said those things before? What about this — William is surprisingly photogenic in that picture with Grace before the MRI.

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  6. Thanks for sharing your heart Julie...Grace is absolutely beautiful just the way she is:)
    Prayers for her continued strength!!

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  7. This is beautiful, Julie. My experience providing autism therapy taught me so much about seeing the person first and not defining someone by characteristics; you hit the nail on the head with that. Grace is so blessed to have you and Will as parents! Thank you for sharing this all with us, know of my prayers for you all as you journey through this together!!

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  8. Hi there! Fantastic post. A friend turned me on to you after she read it and said your writing about your daughter's CP was so similar to mine :-) I have a son who just turned three, has mild Spastic quad CP with hemiparesis on the left side. I'm looking forward to watching Grace on her journey and your family as you continue to surround her with love and support. Please feel free to stop by my blog as well, it has stories of my son and our family. I'd love to connect and offer support from afar as well. God Bless! www.thismword.wordpress.com

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  9. We love you GHB!!! Thank you so much for writing this Julie!! You are so right on so many counts (and I totally LOL'd at the phrase "consistency pants"!)

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  10. What a gorgeous girl (with a gorgeous name!) ~ remember the Rick Santorum line, when faced with sad incoherence like Dawkins --- "these kids are worth every tear".

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