Comments on Fighting Monsters with Rubber Swords: MonsterGram

I just gave birth to a full term baby girl. I was ...

2012-01-15T20:37:34.857-06:00

I just gave birth to a full term baby girl. I was and I'm still not prepared for what I or my Baby have to face. Jennifer was diagnosed with Microcephaly and Bilateral Frontoparietal PMG. She is not able to eat enough by herself and is getting a g tube this week. We where fighting this surgery until now and feeding her for hours every day trying to get enough food in her stomach, NG tube in and out...one day is better and we feel better and want to forget until the next rough day and we realize again this is not going away as much as we are in denial. I'm very afraid of seizures. I never thought this could happen to us. Not only our life will change, I'm a changed person since the day Jennifer was born. You are so brave and god love your child, she is so sweet. We have been watching her on you tube. Bless your heart and thanks for sharing.

Hello, My name is and my daughter Jori was just di...

2012-01-09T18:06:32.303-06:00

Hello, My name is and my daughter Jori was just diagnosed with Bilateral Perisylvian Polymicrogyria at the end of October. She is 7mo old and not only is she having the partial complex seizures but now also has Myoclonic seizures as well. So to say we are going thru Hell is an understament becasue not only did we just learn this about Jori but my husband Jason had a seizure/ mini strok at the beginging of December. One of my best friends created Jori's Journey on facebook, and she also found your blog that I have just started following. I know we have a long road ahead of us, but I'm so glad to know that there is support out there and I hope that my daughter will grow to be as stong and brave as Schuyler! Thank you!

So many ghosts...

2012-01-06T21:05:18.025-06:00

So many ghosts...

Words cannot express how sorry I am for you all. W...

2012-01-03T20:46:24.330-06:00

Words cannot express how sorry I am for you all. We know how hard you fight for Schulyer. I respect your amazing ability to continue to search for a way to beat her monster while trying to give her the life every teenager wants and needs (ie "cheeseburger and milkshake therapy").

Even though I'm learning about seizures, how t...

2012-01-03T13:04:17.684-06:00

Even though I'm learning about seizures, how to treat them, and other assorted stuff related to what your family is going through, I can honestly say that a) I don't actually have any clue what you're going through except that b) I am learning SO MUCH from what you choose to share here and thank YOU for sharing and being open about what you are facing.

Emily, a medical student

have you thought of getting a seizure dog for her ...

2012-01-02T22:27:52.495-06:00

have you thought of getting a seizure dog for her or is there just no point to that? they can alert you to when they are coming and be there to comfort and protect when they are over...

My wife used to have complex partial seizures, so ...

2012-01-02T13:01:12.885-06:00

My wife used to have complex partial seizures, so I know exactly what you are going through on that front.

I also remember just how worried I was the first few times I saw one happen, and how scared I was the first time my wife had one so bad she literally turned blue, so I hope you will understand my mixed feelings when I grit my teeth and express my wish that you get to witness one. Rationally speaking, however, I have to say that knowing was better for me than not knowing, so I hope you do see one, and also I hope that Schuyler's are at the (poor word, but it's the best I've got) "gentler" end of the complex-partial spectrum.

I hated witnessing my brother's seizures (he h...

2012-01-02T12:36:37.561-06:00

I hated witnessing my brother's seizures (he had a brain tumor). They were this visible, scary reminder of his tumor when we were trying to maintain some sense of normalcy. Hoping these become a thing of the past for Schuyler, and you can spend more time having cheeseburgers just because you want to.

I hate the fear that seizures bring to our lives. ...

2012-01-02T06:35:16.203-06:00

I hate the fear that seizures bring to our lives. It's something that I haven't really addressed because my 14 year old reads my blog (when she's really bored) and I don't want her to know how scared I actually am. I'm afraid of losing Sam. It means that I have anxiety every time I have to be away from her, I won't go more than 5 minutes away from school while she's there (luckily our house is in that range!), and I always check to see if she's breathing when I wake up at night. The coordinator for the Epilepsy Foundation in our area lost her daughter to a seizure at the age of 3, and it hits way to close to home. Before Christmas someone had me make an angel in memory of her little girl who also died from a seizure. When I learned that I cried and cried...it's my biggest fear, and I live with it every freakin' day.

I hope you guys get one of Schuyler's seizures on video soon...I know it's hard. And I hope you find a neuro who is good, because those aren't that easy to come by.

Seizures suck.

I'm so sorry! I can't begin to comprehend ...

2012-01-02T00:13:57.418-06:00

I'm so sorry! I can't begin to comprehend how scary it is for all of you, specially Schuyler. All I can offer are my prayers and to tell you that I truly appreciate - and am inspired by - what you share on this blog. Screw those people who say you're not doing enough for your kid because you ARE, and no matter how much time Schuyler has on this earth I know just by reading your posts that you are giving her the best life possible by being her loving parents and staunchest advocates.

I feel for you. It's awful -- seizures, the wh...

2012-01-01T22:34:19.003-06:00

I feel for you. It's awful -- seizures, the whole thing. Truly awful. I don't have any wise words -- only solidarity, and I hope there's comfort in that.

I can't imagine what must be running through h...

2012-01-01T20:21:29.921-06:00

I can't imagine what must be running through her mind when she is having the seizures. It makes my heart hurt for all of you.