Showing posts with label special needs children. Show all posts
Showing posts with label special needs children. Show all posts

Wednesday, August 13, 2014

Hurricane Taylor


This is the first in a series of stories in honor of the decade of Taylor.

We will be celebrating our daughter Taylor’s 10th birthday soon. I’ve been doing a lot of reminiscing lately, as is usually the case when you approach a milestone in life. Since Taylor’s first few years of life were rather chaotic, I never kept up her baby book. I had a box of good intentions – the book, pictures, and various and sundry notes jotted down on ragged and torn sheets of paper. I had hoped to transfer them to the book on some peaceful night when I had a few moments. Those moments never came. I was looking through that box the other night and the memories came flooding back (quite an interesting analogy considering the meteorological events that surrounded her birth).
2004 was one of the most active hurricane seasons in the Tampa Bay area. It was also the year our daughter Taylor was born. Little did I know that weathering those storms was preparing me and teaching me valuable lessons for handling what life with Taylor would bring.








I was 8 months pregnant when the first storm hit. Hurricane Charley was one of the worst storms to hit Florida in many years. It made landfall a little south of us and plowed through the center of the state. It was Friday, August 13th. We were without power for 5 days following Charley. Being 8 months pregnant and without power in August does not make a happy momma to be. I did my best to endure the heat but finally, late in the afternoon of the 5th day, I broke down. I cried that dramatic, emotional cry that hormonal pregnant women cry. I told my husband that I couldn’t take another night of this. As we packed a bag and prepared to leave our home for the comfort of an air conditioned hotel room, the power came on.  

First life lesson of the hurricane season - Just when you’re about to give up hope, hang on a little longer; it will get better.

Frances was the next storm to come our way, about a week before Taylor was born. Wind and rain were the only effects of Frances for us, but just as soon as Frances passed us, we started to track Ivan.
Second life lesson of the hurricane season - Just when you think the storm has passed, there’s usually another one approaching.

Ivan was on a direct path for our area and was predicted to make landfall on September 13th, Taylor’s due date.
The phone call arrived about 10 AM on Friday September 10th. I was at work. Like most working mommas, whether it is at home or in an office, I was determined to keep at it until the very last minute. The call was from my doctor’s office and it was short and sweet. “Be at the hospital at 6:00 tomorrow morning, we’re going to induce labor.” It turns out the hospital was located in the direct path that Ivan was projected to take. The doctor was scheduling all of the moms with due dates that week to be induced over the weekend. By noon, I had wrapped up all loose ends at work, said my farewells to my friends and headed to Walmart. I was going to have a baby in less than 24 hours and would be leaving the hospital a day before a direct hit of a category 4 hurricane. I NEEDED SUPPLIES!

The next day, September 11, 2004, Taylor was born. We called her our “little terrorist”. We had no idea how appropriate that nickname would be.

Hurricane Ivan ended going straight up the Gulf and into the Florida Panhandle, completely missing us.

Third life lesson of the hurricane season - Do not worry for God is in control.

There were two more storms that year, Frances & Jeanne. But it wasn’t until a couple of months after Taylor was born that the real storms hit.
Taylor’s first few weeks of life were rather normal for most infants. There was a lot of crying and fussing and very little sleep to be had by anyone in our house. By her one month checkup the crying and fussing hadn’t ceased and she rarely slept for more than an hour at a time, even at night. The doctor called it colic. I had a nagging feeling that something wasn’t normal. I had two other children, I knew what to expect. Taylor wasn’t ever very happy. She didn’t smile and never really made eye contact. She appeared to be looking past me, not at me. The doctor gave me the typical “give it time, all babies develop differently”, but I knew otherwise.

Our first few years with Taylor were consumed with doctors, tests, hospital stays and procedures. She had numerous health issues. By the time Taylor reached her first birthday, she was already seeing an Urologist, Cardiologist, Otolaryngologist (ENT), and a Neurologist. We were also consulting with a Geneticist. Besides treating all of her health problems, we were desperately seeking an elusive diagnosis. To me a diagnosis meant answers, support, and hope. If I could just find a name for what was causing all of her issues, wouldn’t it provide comfort? Wouldn’t it help me deal with what we were going through? Ten years later and still no official diagnosis, I can tell you the answer is a resounding “No!” What I know now and what I came to realize after many years of a futile search for answers is that comfort, peace, and hope do not come from answers, they come from acceptance. They come when you stop trying to find answers, stop trying to find something (or someone) to blame, stop searching for reasons; when you start living your life with your precious gift.
A gift - that is what Taylor is; a gift from God. We’ve been told before that we were chosen for Taylor; that she is blessed to have us as her parents. I don’t buy that at all. I say that my husband and I are the blessed ones. Taylor was chosen for us, not the other way around. We needed Taylor in our lives.

Looking back, I am amazed at how much my life has changed and how I have changed, all for the better.

Final life lesson of the hurricane season - Storms may cause damage, darkness, despair but storms pass and are usually followed by rainbows; the most beautiful of God’s creations.

Monday, April 21, 2014

Because of Taylor – My Messy Beautiful




This post is part of the Messy, Beautiful Warrior Project — To learn more and join us, CLICK HERE! And to learn about the New York Times Bestselling Memoir Carry On Warrior: The Power of Embracing Your Messy, Beautiful Life, just released in paperback, CLICK HERE!

My Messy Beautiful……gee, where do I start? I can think back to so many times in my life where this would apply.

Messy – married at 20, divorced at 29
Beautiful – 2 amazing kids who are now amazing young adults.
Messy – single mom trying to raise two small kids on one small paycheck.
 
Beautiful – found a confidence in myself that I never had (plus I met my now husband of 15 years while playing with my kids in the parking lot in front of my apartment).

Messy – having a child with a congenital brain malformation that has caused epilepsy and multiple disabilities.
Beautiful – having a child with a congenital brain malformation that has caused epilepsy and multiple disabilities.

Taylor was born September 11, 2004. From early on in her life, I knew that something was not right. She was my third child and I knew what to expect. She wasn’t smiling, wasn’t making eye contact. She wasn’t meeting any milestones. She was inconsolable most days. Doctors called it colic. I knew better.

When you first discover that you have a child with special needs you experience something similar to the mourning process. You go through different phases, starting with denial. Next there is anger, then depression. There wasn’t a day that went by that I didn’t cry. It was messy.
The final stage in the mourning process is acceptance and when I finally accepted the fact that I had a child with special needs, it was beautiful.

Taylor is my messy beautiful.

Taylor is messy in so many ways….the drooling, the diapers, the mess she makes when she eats. When she plays with toys, she would rather put them in her mouth or throw them. More often than not, she puts it in her mouth AND throws it. On those occasions, the toy usually lands in some remote under the couch wasteland that hasn’t been graced by a vacuum in months. Now that’s messy.

Speaking of vacuums, have you seen my house? It’s a mess! One of the many things I have come to accept with Taylor is there really isn’t enough time in the day. My home has definitely suffered and is in no way shape or form Martha Stewart ready. I do manage to get in the basics; the kitchen is clean and the laundry is done. The toilets get a swish of bowl cleaner on a regular basis and the floors get vacuumed and mopped. Maybe not as often as I like, but enough to keep the varmints away!
I too, am a mess. My hair is in desperate need of a cut and color. The nail polish on my toes is at least 3 months old. I can usually count on at least one day a week if not more, that I show up to work with some remnant of Taylor’s breakfast on my clothes. And in those times when we’re going through a difficult time with Taylor, I usually show up to work with most of my makeup washed away by tears.

Yes, because of Taylor, my life is a mess. But it is also so much more than that.
Because of Taylor I have found a renewed faith in God. I have found peace that can only be found through prayer.

Because of Taylor I have found a church home.
Because of Taylor I have made many wonderful new friends.

Because of Taylor I have found strength and courage that I never knew I had.
Because of Taylor I love my husband more than I could ever imagine.

Because of Taylor I have learned that there is more joy and hope to be found in helping others than in focusing on your own pain and struggles.
Because of Taylor, I have come to appreciate every smile, every laugh, and every small milestone.

Because of Taylor, I have learned that life is not perfect. Never has been. Never will be.
Because of Taylor, I have learned that, although life is not perfect, it is beautiful.

Because of Taylor....I AM MESSY BEAUTIFUL!