Wednesday, April 23, 2008

Lessons in History: How to Breathe.

After I left Tim, he spent the first few months attempting to woo me back. Then he got mad at me. Then he just disappeared for awhile. When I started dating again, he suddenly had interest in seeing Emmi. Of course, only when it interfered with my plans. After awhile we settled into a routine that allowed us as little contact as possible, and I focused my attention on starting a new life and Jill and Emmi.

I was always proactive about Emmi's care. When she wasn't progressing like she should, I sought out help. I got her into therapy and took her to specialists. I found a pediatrician who listened to me and took special interest in Emmi.

Emmi kept having these choking episodes. No one could figure out what they were. Then one night when Emmi was about seven months old, the episodes changed. If I didn't have seizures myself, I might not have even recognized what it was. But I knew instantly that she was seizing. We saw a neurologist the next day. He scheduled a hospital stay that included a 48 video EEG. It would be hell. They would test her for everything they could think of. Not one time did she choke or have one of the seizures. We left thinking we knew nothing more than when we came.

Three weeks later the results of the bloodwork came back, and I learned that doctors only meet with you on their lunch break for bad news. You never want the lunch break appointment. It means you are dying.

I can tell you the exact day and time that I was told that Emmi would probably die before her first birthday. I know what I was wearing. My right leg was crossed over my left. I had a hangnail on my left thumb. My hair was in a ponytail.

The bloodwork revealed that Emmi had a very rare metabolic disorder with a life expectancy of one year. Her body can't process protein correctly. It is a genetic condition. One that occurs in 1 in every 80,0000 births. For perspective, downs syndrome is about 1 in 800. At first they assumed, by the bloodwork, that Emmi had the worst form of the disorder. We now know that she doesn't. But we didn't at the time.

So I quit my job, and instead of sitting and waiting for my daughter to die, I made my life about doctors and hospitals and injections and medical foods and making sure she lived. And then she turned one.

And now she is four. Her life is not easy. It never will be. I think a lot of people assume that the only "disability" (cause it isn't really holding her back!) she has is being deaf. But that has been the least of my concerns. She can't die from that. She signs. She now speaks and hears with cochlear implants. It is a non-issue really. The surgeries were a big deal. But the deafness itself is not. What bothers me is that I have to watch her like a hawk when she gets a simple cold. A cold could send her into a tailspin in which her body is unable to maintain her glucose level sending her back into a coma causing more damage to her body. One of her kidneys is badly malformed. She may lose part of it. Her soft palate is not formed correctly making it impossible for her to drink from a regular cup without choking or talk normally or eat tortillas or chips. She is hypotonic, meaning she lacks muscle tone. Doctors are baffled at how she even stands, she is so weak. She has brain damage in the part of her brain that regulates reflexes like the startle reflex. So not only does she not have any balance (common among people with hearing loss), she is also missing other key reflexes. Quite frankly, she should not be able to walk. Granted, she can't walk in a straight line.....but hey! She is tough. She is a fighter. The doctors tell me that the longer she lives the more chance she has for beating this. Apparently the ones who make it past a year, tend to live generally "normal" lives. You know, if normal, includes nine specialists and being deaf and four surgeries before your fifth birthday and such. And most important, she is happy. And funny. She is really funny. And naughty. Which I also find funny.

And somehow through all of this, I managed to figure out how to keep breathing. And raise Jill to be the spunky little thing she is. And somewhere along the way we picked Kenny up and suckered him into our crazy lives. And with the addition of Kenny, I think we all became better people. Happier.

When I came to Houston for a visit I never imagined how much my life would change. I had no clue how Kenny would factor into it all. But that is the next chapter.....and I am going to leave you hanging. Cause I mean like that.


Claudia said...

Ahh, love, you brought tears to my eyes with this one. You are ALL strong and wonderful and courageous. I posted a similar post ( about my niece. Don't tell us 'never', we'll prove you wrong. It's about the human spirit and the will to exist and be alive and to bless ourselves and others with our presence. MAGIC, baby. Magic.

Here's a HUGE frikken' hug for you and your little angel. She's a fierce femme, that one.

David said...

Wow. trish. I have a whole new respect and appreciation for you. I agree with everything claudia said.
Thank you for sharing this story. I am humbled, and in awe of some incredible people, You and your daughter are two of them.

Tina said...

Wow. Emmi is a fighter and so are you!

Allie Bear said...

You know I remember the first time you mentioned about Emmi having a disability I was like, what? When I found out she was deaf I was like, what? When I read this post I was like, what? She looks like a normal little girl, from the stories you have told she acts like a normal little girl. I can only imagine how long and hard the road was to get here and I know her journey will never be over but you've done such a great job handling what was given to you. You don't give up and that shows in Emmi and how much she's been able to accomplish, things she shouldn't be able to do. She has heart and spirit and determination and she gets that from her momma.

Sheri said...

Emmi has always been and will always be a fighter. It's in her genes. That and her naughtieness. :P

Erin and Liann said...

Trish, I have so much respect for you and your family. You have raised two wonderful children and you have a life that I, for one, envy. You have been positive when others have doubted. And I know that you grow stronger with each day. Thank you for putting it all out there.