Thursday, November 14, 2013

Taylor's Story

I have had quite a few people ask me about Taylor lately. I realized that many of you that follow me here may not even know what her disability is and might be too nervous to ask. I know sometimes I feel that way toward other families.

I don't really blog much about her disability but it is not because I am ashamed or that I avoid talking about it. It is because I don't even think about it! She is just Taylor. My oldest daughter. The one that can brighten a room when she goes into it. The one that can get an attitude like no other. She is just....Taylor.

Here is her story. Here is OUR story.

I had an amazing pregnancy. I loved being pregnant. Every minute of it. Even when my head was in the toilet. I still loved the thought of a baby growing in MY belly! Mine. Me. I felt honored. I never had any regrets or fears. I was on top of the world.

I remember the first time she kicked. Brian and I were laying in bed. Talking about baby names, I believe. She kicked once. It was just a flutter but I felt it. Talk about awesome! I will never forget that moment. I grabbed Brian's hand and put it on my belly. "Wait" I told him. I knew she would do it again. And she did. Hard this time. He smiled with tears in his eyes.

 He talked to my belly all. the. time. He called her "Dewey" because I was addicted to Mt. Dew when we were dating. "It just fits" he would say. We didn't want to know if we were having a boy or a girl. We wanted the surprise. You know, like you see in the movies. The mom delivers in all her glory and the doctor announces that you have a perfect little girl or boy. Yep that is how we envisioned it.

(She still looks at Papa like that!)

I was sick all the time. Morning. Noon. Night. I lived off of crackers. I was admitted to the hospital once for dehydration. The bigger my belly grew the more food I could hold down. I had two ultrasounds. Both showed a perfect little baby growing inside me. Each time we were asked if we wanted to know. Boy? Girl? She could have told us but we both wanted to wait for the surprise.

We were getting close. I was 31 weeks. I ate dinner. Roast with the fixins. Mashed potatoes, gravy, corn and rolls. I ate for two. I got a shower. My grandma called. I talked to her while Brian brushed my hair. I got off the phone and had to pee. Which at this point was a common occurrence. Something wasn't right. The peeing didn't stop. My water had broken.

I hollered for Brian.

We got the emergency room around 5:30pm. I was put in a wheelchair and taken to a room. I wanted to walk but I was having a leakage problem. The nurse checked to see if my water had actually broken. It had. Which I already knew that. She started freaking out and yelling "this can't be happening". Seriously? Thanks for the vote of confidence.
I was then transferred to a hospital with a NICU department. Brian had to sit in the front of the ambulance and he told me later that he prayed the whole way. He was freaking out on the inside.

They got me all settled. I was not in labor. No contractions at all. Nothing.

(Now I am going to stick with what happened and not go into what SHOULD have happened! We were naive, only kids ourselves and thought all doctors knew what they were doing.)

They told me I needed to go into labor. Like right away. They did tests after tests. Blood work. Ultrasounds. More blood work. More ultrasounds. Everything looked normal. She was fine. I was fine. Still no contractions. They started me on Pitocin. Still nothing.

We had visitors. Everyone was worried. They were all more scared than I was. Brian never left my side.

A nurse came in to do yet another ultrasound. She asked if we knew what we were having. We told her the hows and whys of why we wanted it to be a surprise. She talked to us for awhile and said the baby was completely healthy. She printed out a picture for us and then pointed out "her" mouth, "her" eyes, "her" nose. I almost cried. She felt horrible but it actually turned out the be a blessing in disguise. 

Night came and went. Morning came and went. I wasn't allowed to eat and that made me grumpy. I was having some contractions and those made her heart rate plummet every single time. They gave me more pitocin. They were trying to "hurry the process". At 2:30pm I spiked a fever. Next was fetal distress. They prepped me and off I went to surgery. They wouldn't let Brian go in with me because it was an emergency c-section. For the first time, I was scared.

I remember feeling the tears roll down the sides of my face as they asked me to count backwards. I got to 5 and someone dropped a pan. A metal pan on a hospital floor. I will never forget that sound. I jerked awake and the nurse told me it was okay. That was the last thing I remember.

I woke up with Brian standing over me. He told me everything was fine. I was fine. Taylor was fine. I was in so much pain. I remember him asking me if everyone could see her or if I wanted them to wait.

It wasn't until evening before I was able to go in and see her. It was dark in the hospital. No one was in the halls. We had to wash our hands and our arms before we were even allowed in. I couldn't even stand.

Brian pushed me in a wheelchair past all the incubators until we came to ours. There she laid. Beautiful. Not nearly as small as I thought. 3lbs. 10ozs. seemed unbelievable but she was so perfect. She was born March 18th at 3:35pm.

We were reading through some of her files lately and found out that she had to be resuscitated and incubated. No one ever told us.

They did numerous tests over the next few days. I did not heal very well. I was in so much pain. Brian never once left the hospital. He would turn me in bed when I needed it. He pushed me to the NICU and back to my room too many times to count. On April 1st, Taylor's nurse told us that the doctor needed to talk with us. We walked to the back of the room and sat at a table. He showed us the scans of her brain. He showed us the damage and explained what cerebral palsy meant. Which is just a general term for brain damage.

We went back to Taylor. I will never forget the feeling I felt when the nurse walked up to me and asked if I was ok. I was stunned. Of course I was ok! She is alive and she is mine. I never even thought twice about it.

They told us all about cerebral palsy. They told us that she would need therapy. Speech, Occupational and Physical. They gave us numbers. Therapists. Doctors. They told us what they thought we needed to know. I realized very quickly there would be a whole lot more I needed to know. I just wanted to go home. Not in a denial way. Just seriously, I wanted to go home. I could handle it from here.

She was in the hospital for 28 days.

She came home. She fit into our little family just perfectly. We learned a lot. She learned a lot.

At first you couldn't even tell she had a disability. Then as milestones periods went by we noticed that she never hit those milestones. She didn't have good neck control. She had a hard time picking up her own toys. Her eyes were crossed. She didn't roll over or sit up.

When she was 3 years old we got her a power wheelchair. They told us not to. They told us that she would not be able to drive it. She did and still does. Now I won't mention how big the holes in my walls are but she does good. We just need bigger door ways. They told us she needed a communication device since she would never speak. Ha! That couldn't be farther from the truth! A good time for her would be talking your ear off. I love that about her.

She has had numerous eye surgeries. A feeding tube placement. A new feeding tube placement. Glasses. Therapies. Doctors galore. She has always been a good sport. She actually loves going to the hospital.

(A few days after eye surgery)

She is so smart. Sometimes it amazes me. She has a memory like a steel trap.

She is confined to a wheelchair. She can sit up if she doesn't know she is. Once she realizes we let go, she panics. Right now, her math is around a 3rd grade level. Her reading is the same. She does science and social studies right along with the other kids. Sometimes I have to adjust the work required but she keeps up just fine. She can type but not write. We are working on writing her name. Her speech can be difficult to understand if you don't know her well. Her social skills soar. She can make anyone smile.

She struggles with being independent. She doesn't like to be alone. Ever. 

She absolutely loves babies. She knows all about her disability. She tells people if they ask. She has many friends at church. She tells me just about every single day that we need to adopt a deaf child. She wants to teach him/her sign language. She wears braces on her feet to keep them aligned. She is on medicine for spastic (tight) muscles. She doesn't need glasses anymore. She has never once slept through the night.

I learn from her every day. I would never be the person I am today if she did not come into my life. She is perfect.

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Don't miss any of our crazy adventures! 


Mary H. said...

She is a beautiful girl. What a touching story, thanks for sharing it. :)

clarissa west said...

I love this!!! Thanks for sharing!! She is beautiful and perfect... just like my Abigail! Her early months/years sound so much like Abigail's... but since Abigail has a progressive disease, she has gotten worse rather than better. Still, Abigail has taught us so much, is a blessing and joy, and yes... perfect!!

Wendy Ross said...

She certainly has an infectious smile! :)

Kimberly Huff said...

well don't I feel like a big cry baby now :) Beautiful........

Charlotte said...

Oh Miranda, that was beautiful. I got teary reading her story. You are an incredible mom and Taylor is so beautiful. Tell her that I absolutely love her huge smile. :-)

Renata said...

Beautiful post Miranda...
She sure is a blessing to your family & has just the most beautiful smile imaginable!
So this made me cry....

Many Me said...

Ohh wow. She is beautiful and perfect, inside and out. She is loved, her smile says it all.
I too was crying when I read this, thank you for sharing. You have a wonderful family!

April said...

I love blog posts like this. I love knowing how everyone has a story. God has blessed you so much. I am so grateful for your being willing to share your story. She is gorgeous, and God knew exactly who her parents should be. ;)

Michele said...

She is beautiful! Thank you for letting us get to know her through this post.

Brittney said...

What a great story. Beautiful girl. Thank you for sharing.

Nicole said...

What an inspiring young woman! Can't wait to watch her continue to amaze everyone!

Amy Sullivan said...

Beautiful story, beautiful girl, beautiful mom.

Mary said...

I have recently found your blog and loved reading your daughter's story. I have a 17 year old son who has CP. He is also homeschooled. I look forward to reading your blog.


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