With a single Stroke.

4 years ago


Question: What life event most changed your perspective on the world?


Not the violent end to my parents' marriage at the age of 11 when the house was in a shambles, dad was in jail, and mother's affair was revealed. Nope.


Not the attempted rape and endless hours of torture I suffered at the hand of my mother's second husband. Nope.


Not the 2am drive across country from NY to CA, in my nightgown, running away from a 9 year relationship to my sisters, on the verge of a nervous breakdown. Nope.


Trying to get pregnant for 7 years, suffering 2 miscarriages, finally giving birth to my perfect Grace, only to hear that she was very, seriously ill and there was little hope for a full, normal life. Yes. That's the event that changed it all for me.


I had my entire world turned upside down one day when my 6 month old daughter was diagnosed with a seizure condition called Hypsarrhythmia. No one knows what this is. Unless you are a neurologist.


I thought my baby had a stomach problem because she projectile vomited every time she drank a full bottle. I took her to the Dr. and was prescribed Zantac for her irritable belly. I noticed my baby Grace would do this odd pattern of bending at the waist and almost groaning while pulling her arms toward her chest in a rhythmic motion. This "clutching" is what made me think it was her stomach. After nothing changed with the Zantac, I decided I would videotape one of her "episodes" and show the tape to the doctor at our follow-up appointment.


I was not concerned that it was anything major. As my pediatrician watched the video, his face went white. He literally took a step backward. I see his reaction and my stomach drops to the floor. He looked me right in the eye and said, "This is a seizure and you and Grace need to go to the hospital right now, she needs an EEG".


The next 3 hours are burned into my memory. Minute by minute. Calling Boyd. Calling my sister. Praying like a nun serving penance.


Boyd and I took our baby home and waited for the phone call with results. When our doctor called, he was crying. This is major. I was wrong.


The diagnosis, commonly called "infantile spasms", is a dire diagnosis. My long awaited healthy baby girl, first grandchild, perfect Grace, may never develop past what we see today. This is the kind of information that was being given to a sobbing Boyd and a stunned into silence, me. Holding hands and watching a tech try and get a blood draw from our screaming, writhing child, Boyd and I vowed on the spot that if that was the case, then that would be our life with Grace. Period.




On to Stanford, Lucille Packard Children's Hospital, to see the foremost expert in pediatric neurology, Dr. Jin Hahn. A second opinion was in order.


As Grace lay in a crib, Boyd cried, and I walked the halls praying. I passed by rooms filled with parents and babies and children with neurological issues and I refused to see myself in their shoes. I had a specific moment of clarity and I went into Grace's room and I grabbed Boyd and I said to him, "There is NO WAY this is correct. There is no way the God I believe in would ask us to wait so long to get our Grace and then take her from us so soon. You have to believe me and believe that she will be ok, that she is here for a reason and the reason is not clear to us yet."


One day later, Dr. Hahn met with Boyd and I and told us that Grace did not have Hypsarrhythmia, (I scream out, "I knew it"!) but that there was something wrong. "Grace has had a stroke. Probably at about 5 months gestation, in utero. 20% of the left side of her brain has been affected. She has limited ability on her entire right side. She may never walk normally or use her right hand; there could be major delays in speech and cognitive development.........."


On and on.....


This is what I heard. Grace HAD a stroke. Damage done. Period. Time to treat her and street her. We have some rehab to get started on. Dr. Hahn had a treatment for the "seizures". He suggested Grace stay at Stanford for the 6 weeks to receive the injections and be watched. I said, ummm no, show me how to give her the shot, my baby is coming home.


Which they did and she did come home and she did go back to Stanford many times and giving her that shot in her chubby little leg was not easy but we were determined to love her through all this.


Grace had PT, OT, Speech, etc...From 6 months old to, well, she had PT just yesterday....


Grace is 12, almost 13. She never had another seizure after the 6 weeks of injections. The 20% of her brain that is "gone” leaves 80% that kicks your 100% in the ass. Seriously.


She runs cross country. She is still working to get that right hand to 100%. She maintains a 3.5 GPA and is funny and popular and has a heart of gold. Her speech is fine. Although she does say ker instead of car. But we like that. Her memory is savant like. She remembers everything. Calendar brain.


GRACE CHANGED MY PERSPECTIVE ON LIFE.  If you meet her, after reading this blog, or if you already know her, I bet she changed your perspective on something too.


Technically she is a right hemiplegia. In my eyes she is just RIGHT. Perfect even.


The world is full of "no's". Grace's condition made me see only "yes's". That's what a mom does. That's what I was waiting for. My yes message. It came to me in the form of Grace.


It's no secret.


Not anymore.   


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