Sunday, May 11, 2014

"You'll never know how much I love you until you have a child of your own."

Mom - "The Real MVP"

Tracy Lynn Whinery Day. Mom. We've always been close and shared most things with each other. She's not just a mom, but one of my best and most trustworthy sidekicks.

Now, I know most children feel the same way about their mothers as I do. (And rightly so!) We'd all line up to put our mom's in the running for "BEST MOM EVER". We'd also do whatever it took to be sure they won the award. We'd brag about how they were there for all of the most important parts of our life. How they shaped and molded us into the people we are today. We'd love to continuously thank our moms and show them how grateful we are for their selfless acts of love and sacrifices they made for our happiness. And our mother's would say they don't deserve any type of award. It's just part of the territory and they were happy to do it.

Truth - there is not a trophy, title, money, or probably even the right amount of words to thank mom's for their love and support. But - this blog will try to explain just one of the many moments in my life when my mom was "the real MVP" in my life. (Ah thank you - Kevin Durant!)

Mom,

I'm sure I've thanked you for this but sometimes I sit around and wonder if you truly know how thankful I am to have you and for your strength during the most difficult time in my life thus far. You always said that I'd never know how much you loved me until I became a mom, and on August 13, 2013, I got my opportunity to experience that feeling.

I knew how special it would be for you to witness the birth of your first granddaughter so I asked you to be in the hospital room with me, but the reality is that I needed my mom then too. Little did I know how much Matt and I would need you in the following weeks.

We all know that things didn't quite go as planned when Cambree made her arrival at 8:28 on August 13th. From being taken out of my arms within seconds due to breathing issues, to the doctor mentioning the area on her leg being a potential form of cancer, I'd say overwhelmed is the best describing word that would hit the nail on the head.

When all Matt and I wanted to do was to take in the first few moments and days of being parents, I am so thankful that you were there to do the "other stuff". Not only did you cook, clean, swaddle, bathe, cheer lead, and shed tears with us, but you encouraged us to continue along our path to diagnose our sweet little Cambree Lynn. Doctors and nurses at the hospital kept giving us different opinions on Cambree's leg and while I heard what they were saying, I didn't want to hear it. You were there to really listen. Allowing Matt and I to focus on being so incredibly in love with our daughter.

At the hospital our pediatrician mentioned Cook Children's in Forth Worth as a good source for getting a correct diagnosis, and you knew just what to do. You began calling people who could possibly get us in to Cook's. When OU Children's gave an incorrect diagnosis and showed us frightening pictures, I walked out of the building literally feeling like my heart was ripped in half. On the drive home, I sobbed uncontrollably and while I knew you shared in the sadness, you tried to keep positive. The pain and grief I had for my daughter and her unfortunate case of events, was surely being mirrored in your eyes. You were set on doing anything you could to help me out and come to some sort of conclusion in order to find the path our life would now take.

You came to every single doctor's appointments with us. It didn't matter one bit how small the room was they gave us, we were going to fit 3 adults and a baby in, because neither of us were leaving our children to endure on their own! You prayed, cried, and helped me cope. You were my right hand man when Matt had to go back to Oklahoma for work. A surrogate husband! :)  I remember being at the geneticists office and telling you that I just could not physically or emotionally take it any more. I wanted to leave, go home to Oklahoma, and just be left to be a new mommy. You shared in my tears but held my hand. I know your heart was broken, too.

Thankfully we found a doctor and diagnosis that we can begin to cope with and understand. Each of the tests Cambree has had to endure have been positive and for that we can surely celebrate. Heck, you may know more about KTS than we do! It's so nice to have a person as invested in this as Matt and I are because I'm sure we will need to lean on you for support again.

We've always been especially close, but in this time of my life, I could not have felt more thankful and superbly proud to call you my mom. Cliche as it may sound: You were my eyes when I refused to see, my ears when I could not hear another medical term, and my brain when thinking clearly was not an option. I'm sure the tears will continue to fall, and I'm also sure you're going to be there through thick and thin. For that, I'm so very, very grateful.

I know you were not intending to teach me a lesson on the depths a mother will go for her child, but I want you to know that I soaked it all up. I hope that some day I can provide the same love, patience, and understanding for my children as you have for me.

I love you to the moon and back Mom!

-Ashley


*Note: I do not blame any of the doctors who incorrectly diagnosed Cambree. Klippel Trenaunay Syndrome is incredibly rare. 1 in 100,000 cases world wide. To put that in perspective, there are about 300,000 births in world each day. Obviously doctors do not see this very often and I'm confident they all did the very best they could to give us the greatest care and consideration.

However, I'm confident that had it not been for my mother's steadfastness to keep seeking more answers, we may not have been correctly diagnosed so quickly. Our current doctor confirmed that most of these cases are incorrectly diagnosed until much later in life, and told us that we are ahead of the game in keeping Cambree's health in check.



**Information on KTS from Genetics Home Reference**

What is Klippel-Trenaunay syndrome?

Klippel-Trenaunay syndrome is a condition that affects the development of blood vessels, soft tissues, and bones. The disorder has three characteristic features: a red birthmark called a port-wine stain, abnormal overgrowth of soft tissues and bones, and vein malformations.
Most people with Klippel-Trenaunay syndrome are born with a port-wine stain. This type of birthmark is caused by swelling of small blood vessels near the surface of the skin. Port-wine stains are typically flat and can vary from pale pink to deep maroon in color. In people with Klippel-Trenaunay syndrome, the port-wine stain usually covers part of one limb. The affected area may become lighter or darker with age. Occasionally, port-wine stains develop small red blisters that break open and bleed easily.
Klippel-Trenaunay syndrome is also associated with overgrowth of bones and soft tissues beginning in infancy. Usually this abnormal growth is limited to one limb, most often one leg. However, overgrowth can also affect the arms or, rarely, the trunk. The abnormal growth can cause pain, a feeling of heaviness, and reduced movement in the affected area. If the overgrowth causes one leg to be longer than the other, it can also lead to problems with walking.
Malformations of veins are the third major feature of Klippel-Trenaunay syndrome. These abnormalities include varicose veins, which are swollen and twisted veins near the surface of the skin that often cause pain. Varicose veins usually occur on the sides of the upper legs and calves. Veins deep in the limbs can also be abnormal in people with Klippel-Trenaunay syndrome. Malformations of deep veins increase the risk of a type of clot called a deep vein thrombosis (DVT). If a DVT travels through the bloodstream and lodges in the lungs, it can cause a life-threatening clot known as a pulmonary embolism (PE).
Complications of Klippel-Trenaunay syndrome can include a type of skin infection called cellulitis, swelling caused by a buildup of fluid (lymphedema), and internal bleeding from abnormal blood vessels. Less commonly, this condition is also associated with fusion of certain fingers or toes (syndactyly) or the presence of extra digits (polydactyly).


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