Tolerance and Acceptance

*** THIS POST IS HEATED***

When I found out I was pregnant with Taylor - my life changed. I instantly had dreams, dreams of her being in every preschool/toddler class I could find for her - Music class, Open Gym, play dates, Mommy and Me tumbling... you name it I thought of it. When she was born at 31 weeks and I saw my daughter for the first time, these dreams changed to just praying she would live. I was raised with the morals of tolerance and acceptance. My parents allowed me to work with special needs kids and they were proud of me for doing it, they also allowed me to take sign language instead of Spanish, knowing that Spanish in this country would get me further - but learning sign language and about the deaf community I learned so much more than another language. I learned acceptance and tolerance far greater than my parents ever taught me.
     When Taylor was born super early and missed important milestones in her development, I knew that God has blessed me with the gifts of acceptance and tolerance. At the age of 14 months old, Taylor started therapies. I was thrown into a world that I never dreamed of. But one foot in front of the other, I realized that the toddler music class was probably to loud and that tumbling class? Ya too dangerous. That mommy play group? too loud for Taylor.  I threw myself into learning speech therapy skills and how to be a physical therapist and occupational therapist all before I finished my own bachelor's degree. When Taylor started going to day care so I could work, it was not long before I had to pull her out due to behaviors. I saw the stares from the "normal" mothers. It was almost as if they say look at that mother, she doesn't understand the first thing about parenting. Taylor is challenging, she is like a puzzle missing all the right pieces. I have been blessed to meet friends along the way that provide me with encouragement and helpful advice that I do not take as judging. They truly have Taylor's interest at heart and not once have I felt like they have made me feel like a horrible mother.
    When Taylor started Pre-KD last year, I admit I had my fears - what will the mom's think of Taylor. Heck what will the teacher's think of my parenting? What I discovered shocked me. This team behind Taylor didn't see my parenting as a mistake, they saw a mother that had tried everything and didn't give up. Now I may not fight doctors for a diagnosis. I just am not that type of Mother - to those Mother's bless you - I admire your ability to juggle everything and still argue with a doctor. I had and have placed all my energy and time in focusing on making Taylor successful. That is just what it is. Taylor has learned so much by allowing me to focus on this. Meal time? Its not a knock down drag out any more. Potty training? Its going.

     When I see a child crying in the middle of wal mart or the commissary I do not think oh what the hell is that parent doing? I think oh that poor parent, how embarrassing. The fact of the matter is kids will be kids - I have seen typical kids throw fits far greater than Taylor's. The answer to this is not to "beat the child" as I have seen this week in several cases... the answer is to redirect the child - I have found that when we are going to be going to the grocery store or any store - I bring a long the iPad and iPod and allow my children to play games. I also bring snacks - Lots of them. I get it Mom's who child is screaming like a monster in the middle of the aisle while trying to choose cereal... I get it mom whose kid is crying hysterically in the middle of the department store. I get it. I get it. I get it.  I do not think a child that hits will learn anything my hitting him in response to his behavior. They are only going to see well Mommy/Daddy hits when they get upset that is what I am going to do as well. While I think it is important for the parents to teach their children. I do not always believe spanking is the answer. I get it southern people, I get it. You and I both grew up getting spanked. We turned out fine. Heck I spank my own children when they do something bad enough to deserve it. But I do not beat them to the point of no return, which has actually been suggested by a fellow mother to me on several occasions ( we are no longer friends).

Taylor has taught me tolerance and acceptance. I wish that every mom had a kid that taught them these valuable lessons. Sadly these are the parents whose kids will grow up with the same mentality.

Taylor is amazing - she is smart, she may melt down over not being able to find a book or because that particular day it is easier to cry than use her voice to tell me what she needs. The point of this whole post is not just about learning tolerance and acceptance it is about realizing that Taylor is my daughter - your comments and stares can stay to yourself.

Princess Eyes, gibberish, & a new perspective

As many of you know, Taylor had eye muscle surgery a couple weeks ago. I am pleased to say that this eye surgery has surpassed what I ever dreamed it could do... Her vision although she will still need glasses has made leaps and bounds since birth - For the first time tomorrow, I will fill a prescription for glasses, that is lower than the original prescription that she received at the age of 1. We are forever thankful as a family, to Dr. Cogen and his staff at UAB - Callahan Eye Hospital in Birmingham, AL.

With the surgery came the last two weeks of what I would describe as a rollercoaster of events... From overheating to fevers to throwing up all the way to fainting. I thought we had seen it all, till I noticed that Taylor had begun to stutter again... something that we had not seen in a few months. With the stuttering came back what we have dubbed as Taylor's secret language... Some days I can hear Taylor clear as day and understand her - just yesterday she told her Occupational Therapist, that Princesses do not go to space. But as we go further and further away from the surgery ( whether it is related or not) she has definitely regressed back to Taylor's world... I can only pray that with intense work at home and in therapies we bring her back to where she was.

With all of this Nick and myself have gained a new perspective, not only for our family but for our relationship as well. There are times when I have cried about everything going on with Taylor or I meet another Mito mom and see similarities or they see the similarities and point them out before I have a chance to speak...I have spent many nights sitting in bed crying and praying that we find answers soon. Here is to waiting on doctors and continuing to fight for Taylor. <3

A reflection on the last 3 years...

I was met with a challenge from a "online friend" who has been a great source of strength since I gave birth to Taylor, 3 years ago... She challenged me to sit down and type out the frustrations and the triumphs of the last three years... With a simple agreement that when I was done I would see that there are far more triumphs then challenges. So thank you March of Dimes for making me realize that Taylor's story matters and thank you to everyone who has been there the last three years.


So here we go -

Triumph #1 Taylor was released from the NICU just two months after she was born!
Challenge #1 Taylor was in the NICU and had a scary stay, that even though I remember it I am able to focus on the triumph of this!

Triumph #2 Taylor mastered physical therapy and walked before she turned 2!
Challenge #2 Carrying Taylor because she couldn't walk while 6 months pregnant was a challenge!

Triumph #3 Taylor learned how to speak and boy did she take off!
Challenge #3 Taylor hits pits of regression, still where she chooses to not speak to anyone or anything.

Triumph #4 Taylor successfully learned how to go down a slide, without screaming!

No challenge here!

Triumph #5 Taylor started putting phrases together about the age of 35 months and has mastered making three word sentences and sometimes she likes to surprise us and say more at once :) Like, " daddy I wet my bed, so you have to put my sheets in the washing machine" :)

No challenge!

Triumph #6 Taylor turned three!!!!!!!! The neonatologist in the NICU was a mean mean man, he informed us when Taylor was only 48 hours old that if she lived to see outside the NICU that she would most likely not make it to her third birthday! Well, guess what? We made it and we are making it past her 4th birthday!


Triumph #7 Taylor started school, a day I thought we would never see - I still get teary eyed when I say, its a school night. She truly has amazed us and taken off - completely potty trained at school and listens well.


I think with every kids life there are challenges, but with our life and with Taylor it is easy to get overwhelmed in the day to day therapies and challenges, but to see the positives in our life helps a ton!

So I leave you with this video It truly says everything that I want to say!

http://www.youtube.com/watch?v=COuQ8y2Adns


Also please be patient with me for the next couple of weeks - I am focusing on my family - Family is the greatest thing you ever get given. So embrace it and love them! <3