That Day

Taylor's first swallow study was an eye opening experience one that will stay with me for many years to come if not forever.

I recall the shock on doctors and nurses' faces when they saw how Taylor swallowed. They would gasp in horror as fluid went into her tiny lungs and gasp at the sight of how uncontrolled Taylor's tongue was when she fed from her bottle.  Their reactions terrified me. I mean, I had no idea what was going on or even understood what a swallow study was in the first place.

In my frantic and vulnerable state of mind I was on the phone with my mother-in-law right away. I distinctly remember talking to her and hearing her say over and over "I knew it. I knew something was wrong. I told Max there was something wrong with our baby." And she was right. She told us something was wrong with Taylor, but I disregarded her observation. I guess sometimes no matter how obvious a situation is we mentally don't want to accept it.

Now, of course we noticed little ‘things' and we were diligent in consulting with the doctors and such, but never did the thought of my daughter being handicapped cross my mind. As a first time mother I wanted so much for Taylor and so when I noticed that Taylor was not doing what the other kids her age were doing it frightened me to the core and not because of a certain title that would be forever etched, but because there would be a whole other world to cope with.

In the early days of Taylor's diagnosis so many times I would cry and cry to friends and family. Back then I desperately needed people for support, people to talk to, people to help me understand why this was happening to us. It's now been almost two years since that first test and I don't cry as much anymore. Looking back, I realize that was my way of dealing with things at the time, today, I am stronger for it.

If I learned one thing from all this is that no matter what happens, no matter what we go through, in the end the sacrifices that we make as a family is all that really matters; the sacrifices my family and his family have made for Taylor. I am, also, forever grateful to the many friendships cultivated over the years and I appreciate you all very much. Now, even though there have been many sleepless nights and will remain well into the future I would not trade my baby girl for the world. Love you TBug!

Thank you Maria Piork for helping edit. Please be sure to follow her at marialovestowrite.blogspot.com

Gods Plan

Sometimes I think this is too much for one person to bear, but still I press on. I put a happy face and convince myself that I'm strong and I can overcome anything and yes, most days I can. But, yet so very few people really know that I have moments of hopelessness, moments that burden me and cause much heartache. Maybe these are the times when one needs to turn to God and ask Him the age old question: What is life all about?

I used to think life was about ‘looks', and the car you drove, the brand name ‘stuff' Louis Vuitton, Prada, all that fancy stuff, but it isn't. Now, don't get me wrong all of that is very nice and deep down it is stuff that I very much would enjoy, l but I've come to the realization that the meaning of life is so much deeper than that of material things. I've learned that the real meaning of life is that first step, that first time a child accomplishes a difficult task, something she has worked so hard to do. Many a time I hold Taylor tight in my arms and I promise her the best life possible when I myself don't really know what's in store for her.

Life by its very nature is crazy and surreal. Think about it, we are born, and making the best of what we call "life." So, we come into this world, we learn, we grow up, we make plans. As for me, I had so much planned out, I knew what I wanted, and I'd saved for a life of luxury someday. Then, in the blink of an eye the perfect life I anticipated was replaced with total chaos. It was a very scary thing, still is at times, yet in this one year I learned more about life than in the other twenty-six years of my existence. During this very critical time I truly learned what family, love, joy, and happiness is really all about. I discovered that people are still good, and that people still care. I learned that in all reality God had given me the most precious gift I could ever ask for.

So, I prepared for what I thought was life, but you do not determine your future, not really. You can prepare and plan, but that does not always mean it's going to go the way you intended. One morning my life was headed in a direction and before I knew it God changed gears and handed me a new plan.

Here I am now watching Taylor as she sleeps peacefully and I think to myself, what if Taylor was "normal"? Would I love her any differently? Would I care for her more? Less? No! It would make a difference, of course, it would not change how I feel about that sweet little girl, nor would it ever change the way I love and care for her. Friends: Plan then plan for the unknown and if that day comes your way and your life is forever changed trust that it is God's will.

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

Is It Freedom of Speech or Just Plain Rude?!

Freedom of speech, what is it, really?

Does freedom of speech give anyone a license to say whatever they want regardless of who’s around? If someone swears and children are nearby, should you ask them to stop?

My cousin and I had a conversation regarding this topic recently and she said “You have freedom of speech just as much as he does, so if you’re offended say something.”

Scenario:

There you are enjoying a nice birthday dinner and the guy next to your table who’s visibly drunk and being rude on many different levels calls his friend the "R" word, which we all know is a derogatory term for someone mentally challenged. Would you, 1) Ignore him. He's drunk, in his own world so to speak. He’s impaired and may not even know how he affects those around him. Or, 2) You confront him. You tell him that he offends you because you have a child with special needs.

I think deep down inside no one wants to face a hostile situation especially over words that someone may not even know are offensive. So perhaps education is the best possible way to make people aware. My mission will now be to help others understand that words can hurt. I vow to withhold from using words with derogatory meaning and I invite you to consider the same.

As Taylor’s mom I’m her advocate and one of my greatest fears now as Taylor gets older is that children will make fun of her and call her names.

I think about the child that stared at Taylor's tummy and I had to take the time to explain what the G-tube was for. It occurred to me that I myself did not know of this world before Taylor, why would anyone else?

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

2Q37 Deletion Syndrome Hike for Cancer

The American Cancer Society: 2013 Climb to Conquer Cancer of Phoenix AZ

As you know, my daughter, Taylor, has been diagnosed with 2Q37 Deletion Syndrome. As part of that Taylor must be checked every four months for Wilm's Tumor, which is a cancer in the kidneys. As she gets an ultra sound done on her kidneys I pray that the results come back negative and so far we have been very blessed.

Just like I hope there is a cure for missing chromosomes someday, I too hope there is a cure for cancer and I know the more participants the more chances there are! Please join Taylor and I on this hike or at least donate to the cause. The hike is a lot of fun and is on a paved road, so no need to be a "hiker." I hope you can make it!

Because nearly everyone has been touched by cancer in some way, we've decided to show our support and make a difference by forming a team to support the American Cancer Society’s lifesaving work in research, education, advocacy, and patient services Using the links on this page, you can join our fight against cancer by clicking to Join our Team or Donate. Today, there is more hope than ever for people facing cancer. We hope you will join our team or make a donation today!

I'm Back!!

Hello everyone!

It’s been a while since I last published a post and since then a lot has happened.  Taylor has had surgery for a G Tube in her stomach as well as having a belly button surgery to make her belly button actually look like a belly button, lol. She has also celebrated her very first birthday, and just got over pneumonia for the sixth time! Let’s not forget of course that I am still disputing (fourth attempt!) to have Taylor’s DocBand covered by her medical insurance.

And after all the fun I’ve been having it dawned on me that that I should stop by Taylor’s blog and actually write some thoughts to at least tell you guys what I’ve been up to.  So here it goes: I’ve been in a funk. Big surprise, ah :)

Well to be honest, it’s more like I’ve been a hermit; seriously. It’s weird how something such as a surgery can be so traumatizing and affects day to day life without you realizing it. I’ve been in my own little world.  As the mother of a child with a rare syndrome I have a lot to deal with and to be honest there are times I wish I was still, you know, that innocent little girl who would ride her little purple bike around the neighborhood, without a care in the world.  I’m sure a lot of us feel that way sometimes, especially when life ‘tests’ us.  Don’t get me wrong, I thank God everyday for my sweet little girl Taylor, she’s a blessing and I wouldn’t be the person I am today if it weren’t for her, yet I have all these conflicting emotions.  They range from sadness, to excitement, to turmoil to disbelief, and heartache. And even as I tell myself all the time to enjoy the small things, the journey…I’m sometimes so overwhelmed with "crap" that it’s nearly impossible to see the light at the end of the tunnel.

I’ll share with you an odd thing that occurred lately. It was that right after Taylor contracted pneumonia (again) and one of her surgeries was postponed that I had a surge of energy.  I had been so wound up about her surgery and nervous and distraught that when it was postponed it was just like I took a breather.  And soon I noticed that I began to answer my phone, I began to take pictures again and began posting them on Facebook. It was almost as if I had thrown myself on the couch after a long day at work and just took a time out.I should really learn a lot from Taylor though. She is always happy even when she’s hacking her lungs out or vomiting. She is a miracle baby and I truly treasure her. She continues to amaze me every day and I look up to her. She’s my hero!

"Children remind us to treasure the smallest of gifts, even in the most difficult times." - Allen Klein

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

One Step Forward Two Steps Back

Taylor has overcome so many obstacles since being diagnosed with 2Q37 Deletion Syndrome and I’m truly proud of her. I remember a time when I didn’t even know if she would ever hold her head up and now she goes around pushing her walker; now she won't walk in it but she’ll push it all around the house, lol.

Yet with all the excitement and admiration I have for Taylor when a hurdle arises I’m down again feeling jipped. Yes, I said it! Sometimes, I feel jipped! (I know you are probably thinking I am a brat and childish) But, why does Taylor have to constantly be facing challenges? Why does she need to keep fighting? So no matter how excited I get over an accomplishment I also cry.

Taylor’s complication this time around is not being able to gain weight due to her illnesses and chronic vomitting. This means that she’ll have to have a feeding tube connected to her 24/7. And when the doctor delivered the news, she said it as though it was no big deal, but my heart was crushed for Taylor, so I bawled right there at the doctor’s office. Taylor can't even hold herself up as it is and now they want a feeding tube added, which is an additional five pounds at least! How will she crawl or even learn to walk or manage to not pull her G-tube out? I mean, we put her through horrible surgeries to help her to be more like a ‘normal’ baby and move like one, but now I feel like we’re at square one dealing with feeding issues again.

We all have off days, right? So, today I feel jipped because I'm numb, and hurting, and upset. But deep down inside, I know I'm blessed to have a sweet little girl in my life who looks to me and wants me because I'm her mommy. Now, I may not be able to take her pain away, but I will make sure she lives an amazing life regardless. And must remember that we have still made so much progress this past year!

I love you Baby Taylor and no matter what I will always be there to hold your hand!

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.