Special Order

It has been a while since I wrote but, here it goes! Just a recap Taylor is doing phenomenal!!! She learned to talk at 3 years old when she began school and now she talks up a storm! We laugh at all the silly things she thinks of and how dramatic she is. It's been a true blessing for her to be around other kids her age. She also, was donated gymnastics lessons (Thank You Firestorm Cheer) which, she asks everyday to go do flips and will definitely be in her future!! So, watch out for her at the Olympics! And this summer she learned to swim!!! YES! Ms. Taylor diagnosed with 2Q37 Deletion Syndrome can swim! As my Friend, Misty said, Gravity was holding her back. We are so proud of her and she is actually very impressive with her swimming skills!

Remind yourself always, Life does not end after a Diagnosis. That's all it is, is a diagnosis. Yes, there are things that come up (like Taylor having heart surgery tomorrow) but, our life is not like most and that is okay. That's Life, right?

A beautiful Younique Sister of mine recently sent me a video... A man was irritated because his food had taken so much longer then everyone else. Even the people at the other table who sat down after him. He asked the waitress, "Why? Why is my order taking so long?"

The Waitress Replied, "Your order is a special order and takes longer to make."

It reminded me of our life. There are things that I wish I could do or things I wish I did not have to deal with as a mother of a child with special needs but, she is exactly that! SPECIAL! She touches hearts of others that I have NEVER seen before, even complete strangers, not to mention myself.

God put extra time into her with her special spirit. If you look around you will see how much your child has affected others. Taylor may have taken 2 1/2 years to learn to walk but, she walks and some cannot say that. She may still have a G Tube but, she can eat and drink now too. It may have taken longer but, she is doing it and I will be there every step of the way to cheer her on.

It is only a diagnosis. It will only hinder what you have it hinder or how you perceive it to be. So, when you are discouraged or not sure how it will end, just remember, you have a Very Special Order Being Prepared.

Preparation

As the mother of any special needs child will tell you there comes a time in our lives when we are faced with a very real set of limitations. And let me tell you acknowledging that such limitations even exist is a difficult thing to deal with, at least for me.

For starters, I cannot be in denial. Whether or not Taylor life is adjusted to her specific limitations doesn't increase her chance at a normal life. So then does this mean that I should keep Taylor from doing things other normal children do? No, of course, not.

I continually try to accept Taylor and her syndrome and the limitations it brings. Say we're at a birthday party, right off the bat Taylor cannot consume the food most children eat or drink. Does it bother me? Yes, it does. But then I think to myself if I bring the snacks she can eat, does it make any difference? No, of course, not.

Now, what about when there are accidents or emergencies? As the words imply accidents and emergencies are just that unforeseen and unpredictable that we must deal with the best way we know how.

Let me use Taylor's seizure as an example. Last week Taylor had a seizure. She fell straight back and her head hit the concrete. The noise was the worse type of noise I ever heard before. My daughter's head had just hit solid concrete! And then it happened Taylor went limp, her eyes were disengaged, her arms just dropped to her side and she couldn't hold her head up. As I held Taylor close to me tears streamed down my cheeks and all I could do was tell her that everything would be okay. In the face of chaos I remained calm because mentally I was prepared for this, for all the limitation and the unknown.

That day as Max and I soothed Taylor and maintained our composure the easier it was for the three of us to deal with the issue at hand, good thing too because that night Taylor had another five seizures. I'm happy to report that Taylor's CATscan came back fine and the hospital ER immediately took her back for testing as soon as we arrived.

I think it's critical to be mentally and emotionally prepared because when we are we're stronger and more rational and able to accept what's going on. It does not mean that I'm not scared or sad, it just means that I'm in control of my actions and emotions, which really is the only thing I can control.

Accidents and emergencies will happen, and as the mother, father, friend, or caregiver of a special needs child or not decide to be ready and prepare for whatever may happen.

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

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.

Another Baby?? Are You Crazy??!!??

People often ask me, "Will you have another baby?" The answer: A definite “No”.
Caring for Taylor consumes so much of my time that the subject of a second child is out if the question…for now. And then even when Max and I begin to consider the possibilities we have to be very mindful of the risks and implications of having a second child.

For starters what if the very genes that caused Taylor to miss Chromosome 2q37 were to be passed on to our second child? Secondly, with all the care that Taylor requires would I be able to dedicate adequate time to the new baby? Then of course is my fear of being able to handle a ‘normal’ child. Sometimes I watch healthy kids play and am amazed at just how fast and active they are.

Funny how things are though because last week when I was in the hospital with Taylor tending to what I always do as my therapy crocheting a nurse came up to me and made a comment, "I still have my baby blanket from my mom, and will give it to my daughter in the hopes that she in turn gives it to her daughter." I couldn't believe how that one conversation completely affected me and what tears it brought. I guess it struck me at that moment, you know, the thought that Taylor in fact may not be able to have kids. I’m just like any other woman out there, and the thought of not being able to have grandkids really saddened me. So, I told myself then “Yes, I do want to have another child. Why not?” Then my mind was made up.

So sometime, far into the future (lol) I may consider a second child. Max may not understand this, but years from now I may give another baby a shot. Besides, I think Taylor would make a great big sister!

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

Two Angels on Earth

As we got to the hospital a little girl was in the waiting room. She walked over around the stroller to look at Taylor. The minute their eyes met it was as if two angels began to see each other here on earth after so many years. Taylor, who was very sleepy and quite began to giggle and thoroughly enjoyed her company at that exact second. She was a thirteen year old girl, who like Taylor was in the hospital frequently.

We asked what she was there for and she said very sadly she had to be put under for surgery again. After being born at 28 weeks she lived a hard life of constant surgeries and the usual medical problems frequent visitors of Phoenix Children's Hospital had. She showed scars on her neck and told us how she had a fundoapplication and G Tube to help feed her. Similar to what Taylor would be needing soon.

Two Angles on Earth

But, I strongly believe that Taylor has 2Q37 Deletion Syndrome for a reason. That she is not only here to help her family, but others as well. I saw how comforted that thirteen year old girl became after she saw how excited and giggly Taylor was with her. So no matter what had happened that day, I saw a miracle. I saw two of God's angels that had met again here on earth after so many years. I hope someday we see Latasha again and she lives a beautiful long life just like Taylor.

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

YUM, YUM, YUM

Continued from last week...

So after the doctor gave us the okay to feed Taylor twelve spoons of Stage 2 baby food twice daily we went by the store and bought baby food right away. It was surreal weird, and crazy, all rolled into one. I usually avoided the baby food aisle or even looking at bibs for that matter.  So as I walked through the store I seriously wanted to break down and cry from joy. Instead, I became an overjoyed lunatic looking at all the jars of baby food analyzing them carefully, I’m sure I must have looked half crazy to onlookers.

Given that that particular day had ranked as one of the happiest days of our lives Taylor and I waited patiently until Max got home and as we sat as a family at the table to eat dinner so did Taylor as she too ate her baby food. It was so exciting! I know it sounds strange, but when your child gets pneumonia from her aspirating her own saliva, her being able to eat baby food was a major milestone. To me seeing Taylor eat that day was the equivalent of seeing her walk down the aisle, but she may never get that chance. That moment was so special in our lives that it was as if nothing else mattered and at that time, nothing else did. All I knew was my baby girl was eating like a big girl!

So we began to feed Taylor sweet potatoes and she continued doing well. Max had the camera prepared and we took tons of pictures. And I continued to keep my eye on Taylor like a hawk to make sure she had swallowed the baby food down the tube and was still breathing. And as you can imagine as excited as I was that she was eating, I was also a hot mess unsure if Taylor would choke. And of course she didn’t, she actually enjoyed eating every bit of her baby food.

Since that eventful day few weeks back Taylor has being doing extremely well with her eating. She absolutely loves it and now the possibility of her at least eating the frosting off her birthday cake is coming to life!

When I started this blog I promised myself to be honest as I wanted others to see our struggles and our triumphs, and to keep me honest I cried a lot over all the ‘what ifs’, as I had doubts, yes, I did I had many doubts.  But the reality is that miracles can happen and prayers are answered.  See one day I was bawling my eyes out next to a hospital bed crying over the fact that Taylor may never swallow and then months later I’m ordering a special birthday cake made of only frosting, ha, ha.

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

Round Two

The day finally arrived!

The week was dragging like most weeks do when you’re anticipating a big day. I was eager to know if Taylor had improved on her swallowing. Shortly after we were brought to the X-ray room where Taylor was placed in a car seat like chair device and was strapped down a massive machine began to display an X-ray of Taylor’s swallowing.

The speech therapist and the radiologist were in the X-ray room with us and so began Taylor's second swallow study. Given how traumatized I had been the first time around, at that moment I was again terrified. Luckily for me that Max's mother had agreed to accompany me for that second test.

So in this room they did several swallowing exercises, first they handed me a spoon and a cup which contained a substance that mimicked that of twice the consistency of honey. "Okay, please go ahead and feed her." As I took the spoon and cup I felt strange and honestly had no idea what I was doing, but I began to feed Taylor who kept wanting to grab the spoon. Soon we were both covered with white cream all over us. It was everywhere, her nose, cheeks, chin, hands, legs, EVERYWHERE! She was enjoying it though!

As I listened to the doctors’ conversation I could pick up that Taylor was doing much better than last time. So, the tests continued and then they proceeded to feed Taylor the same substance (but only the consistency of honey) through a bottle.  Taylor began to swallow at first and it seemed to be going okay, my heart raced… But since Taylor appeared to be moving a lot the doctors seemed unsure. They then tried the test again with a more less consistency and that time Taylor began to aspirate so the testing stopped.

When I turned to the doctor he narrowed his eyes at me and asked, "Why are you crying? This is good news, isn’t it?" They were tears of joy, tears of relief, of course. I replied, "You have no idea how good. I have been wanting for this day to come for so long!" I had, I really had; I’d actually dreamt of the day Taylor would be able to swallow and imagined how I would react, and as I’m sure you can already deduce, yes, I wept.

Soon thereafter we were in a room with the therapist and she began to explained how Taylor's new feeding would go. As we were talking another nurse came in stating the doctor needed to talk to her. During her absence I noticed that Taylor, who was sleeping, was breathing differently and then suddenly she just stopped breathing altogether for a span of about five seconds! My heart sank and as I rushed to grab her Taylor then took a huge breath. Moments later when the therapist came in and I told her what had had happened she said, "That's what we want to talk to you about." The doctor replayed the X-ray video in slow motion and could clearly see Taylor was aspirating when she was being bottle fed. The doctor then said as a result of that we could not proceed with having Taylor be fed from a bottle.  So the therapist told us to continue feeding Taylor her usual twelve teaspoons of Stage 2 baby food twice daily, as this also a means for Taylor to get used to eating the consistency of baby food.

All things considered, I was pleased. All I asked of God that day was for Taylor to make an improvement and she did. She had made a huge improvement. I am so very thankful and so very proud of my baby Taylor.

Continued.... until next week.

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

The Realization

It was Thursday, July 19th and Max had just gotten home from work, and as was the usual we played Xbox; this is our "quality" time together.  Sometime after we began playing, however Max paused the game and turned to me and said, "You know? Today I realized that Taylor will always need us and have problems. When we were on our walk she looked at me and I saw it in her face, that she had a syndrome." I began sobbin and he too cried, even now as I’m thinking about that day I want to cry as well.  And here I thought we’d made such strides, yet that simple conversation had brought back so many feelings I thought I’d overcome.

That same night, Max and I talked about what we both understood about Taylor’s condition and as we did we both hugged each other as we had such grief for our daughter. I knew in my heart that as a result of Taylor’s condition that it’d be likely that she would always depend on us for everything and I had silently coped with that fact.  But that night to hear it from Max’s mouth and to see that it had finally sank in, that Max had finally accepted this reality it was overwhelming and moving to say the least.

That night I called my father and spoke to him on the phone, I needed advise, comfort, reassurance…then later I cried myself to sleep. Hours passed and I woke up with puffy eyes and a heavy heart and to some point resentful. The following day I spoke to my cousin Trisha, who made me realize that what was happening was okay. After all I had already dealt with the grief and had moved past it and was working to control my emotions, yet Max was just getting around to grasping the reality of it all.

Men walk out on their kids every day for no other reason than to be freed from responsibility, a sick child and a hysterical mother would be an even a better reason for a man to walk away, but not Max, he has been there and stuck by us and has given me the strength I need to deal with our daily hurdles.  Max is a remarkable man and amazing father. Frankly, I need Taylor more then she needs me and I need Max more then he needs me.

I am grateful everyday that I have Max, Alexus, Jacob, and Taylor close to my heart and in my life.

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