Saturday, February 15, 2014

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.

Friday, October 4, 2013

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

Thursday, September 12, 2013

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.

Saturday, May 11, 2013

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.

Thursday, January 10, 2013

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!

Sunday, January 6, 2013

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.





Saturday, December 8, 2012

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.

Friday, September 21, 2012

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.


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.

Thursday, September 13, 2012

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.

Tuesday, September 4, 2012

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.

Thursday, August 23, 2012

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.

Thursday, August 16, 2012

Taylo'rs First Surgery

The days leading up to Taylor’s first surgery, I found myself awake at three in the morning cleaning my house. Aware that such hyper activity was unhealthy, I would make myself rest and I would literally lie in my bed completely exhausted but awake for hours unable to fall sleep; my mind was racing and I felt as if I couldn’t shut down.  

By the time Thursday morning rolled around the day of the surgery I had had very little sleep that week and I was extremely fatigued. Soothing my nerves immediately was seeing Max’s parents at the hospital; it was comforting to know that we had such a wonderful support team.

Soon after arriving Taylor was admitted and we all waited patiently for the doctor to come and meet with us and I was calm and collected, I was holding it together very well and I was very proud of myself.
When the doctor came in to talk to us he explained the surgery as a routine/typical surgery.  He went on to explain in detail what he would be doing to Taylor's vocals. The doctor was very thorough and I was soon set at ease, I trusted in his competence and thought he would do a great job. And though no one ever wishes for their child to undergo surgery, I was very thankful that there was in fact a procedure that would help Taylor one day eat on her own.

Soon after my parents came into the room we met the anesthesiologist. We were asked the same series of questions that most people are asked when they’re about to be admitted at a regular hospital and then he asked, "Has anyone in your family had any problems with anesthesia?" I replied, "No and Taylor has had it twice and it’s always been fine." He then said, "She could be put to sleep twenty times and all it takes is that one time and never come out of it." My heart sank and I began to feel ill in my stomach holding back the tears of his response. He then reached over to take Taylor from me and I gave her one last kiss and hesitantly passed her to him.

As Max and my mom chatted, my dad and I trailed behind and I was trying hard to hold back tears, but they started to spring from my eyes. My dad closed in and putting his arm around me he said, "Everything will be okay." I knew it was not major surgery, but still I was having a hard time holding it together. Shortly thereafter, Max comforted me and we went for a short walk.

A few hours later a nurse came out and said, "Two people can go back to see Taylor Alvarez." Max and I jumped out of our seats. I remember wanting to race back there to the recuperation room to see my baby girl but had to fall back and civilly listen to the doctor as he explained the surgery in detail. Moments later when we were finally able to see Taylor I noticed that she was groggy still heavily sedated from the anesthesia.  The nurse however, was nice and allowed me to hold Taylor.

As I held my baby girl, I thanked God for taking such good care of her and thanked Him for ensuring that she smile another day.


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

Thursday, August 9, 2012

The Sadness

In this blog post I was to reach out to those dealing with 2Q37 Deletion Syndrome and tell you that you are not alone. I also want to help others who can relate in their own special way. So here it goes...

I am an open person and am comfortable sharing my feelings and as such I want to talk to you today about some of my darkest moments. As some of you already know, I’ve been through a lot in a short period of time and our lives (Max and I) were flipped upside down in the blink of an eye. So, it wasn’t a surprise that “Situational Depression" set in. Today, however, I’m getting better and stronger and I’m very proud of that. I have to hold it together, Taylor is my daughter and I need to be her support system.

My mom told me recently, "You're coping with the 'death' of a healthy baby and now you have a new baby you are getting used to." And my mother is right; I really am getting the hang of this. I’m learning a new way of life: a new way to feed a young child; better time management; more patience.

In all honesty, at first I did have my doubts though. Could I really do this? And as anxiety built up I cried many nights feeling sorry for myself, I sometimes still do. I just have to keep reminding myself that it is okay to be frustrated that I have to go through extra effort to take care of my daughter; to be frustrated at seeing just how much Taylor tries to do something and is so close, but yet she just can't get it; to be frustrated that I have to clean up vomit instead of Cheerios. And worse for me yet, is the not knowing when/if my daughter will enjoy the taste of food.

One of my saddest notions for me now is to imagine Taylor unable to eat a piece of her 1st Birthday cake.  This truly depresses me. I know that even as you’re reading this you may be thinking that this is ridiculous, it is just a cake, but to me it is much more. Taylor’s inability to enjoy a piece of cake is yet another aspect that separates her from other ‘normal’ children. Now, I know that I’ve been told that Taylor cannot distinguish between a ‘normal’ and ‘not so normal’ life, but I do.  It is very true what the others have said, “Taylor’s rare condition may very well be much harder on you the parents, than on her.”

And yet in spite of all the hardship how amazing it is to hear little comments such as:"You're a great mom." or "I couldn't do what you do.” help me. Or even seeing Taylor FINALLY accomplish something she has literally been working on for months. Or that incredible smile on her face when she’s moving freely in the water or sitting up like a big girl.

This sadness won’t always be a part of my life. But for now, I’m coping with things the best way I know how. Thankfully, I have had courage to get help and am working to prepare myself for those unexpected daily challenges as I pray for strength to hold everything together.

"Anyone can give up, it's the easiest thing in the world to do. But, to hold it together when everyone else would understand if you feel apart, that's true strength." - Anonymous

Thursday, August 2, 2012

My Tiny Toes

I thought I’d share a funny story with you guys this week. 
 
When Taylor was barely a couple months old and before Max and I were aware of her syndrome we noticed a peculiar detail: every pair of shoes she owned were too big on her, even the newborn type. Now, if you’ve ever seen Taylor's closet you know the girl has outfits to last a lifetime and as far as I was concerned she needed to have the shoes to match, of course. So, when purchasing new shoes I took the concept of her clothing, 3mos-6mos; this should work right? Wrong! At least that was the case with Taylor.

So one day I’m having Taylor try different shoes on and none of them fit and I was appalled, how could these manufacturers not be able to get baby shoes right?! I was convinced all manufacturers were highly incompetent. Now, several months later fully aware that 2Q37 Deletion Syndrome children are prone to having smaller feet I laugh at how I quickly I generalized and lumped ALL manufactures in the same inept category. And yes, don’t worry, I won’t be writing any further complaint letters to Old Navy and Gap. 

Luckily for us and Taylor is now able to wear shoes. Sooooo naturally, I’ve stocked up on some very cute, adorable shoes.

We’ve been advised that the day Taylor is able to walk that it is likely to be somewhat clumsy and without fear. So, if you should ever stumble across a cute little dark haired, green eyed girl making a wobbly run for the curb try your best to catch her before she falls flat on her face. I would be extremely appreciative J

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

Tuesday, July 24, 2012

The Answer

During Taylor’s first stay in the hospital she had almost 50 mL of blood drawn for different genetic tests.  And for those of you who may not be aware, 50 mL is a lot for a twelve pound baby. The nurses affixed the intravenous (IV) on each of her little hands then when blood would not draw from the veins on her hands, they resorted to her head and last resort was her neck. You can imagine how stressful an experience this was for a mother to witness and hold her baby down as they are screaming. It was a horrible ordeal and I hope Taylor never has to go through that again.
Six weeks later when the lab results were in, I met with the Geneticist on a Wednesday morning.  I recall her initial question to me, "What were you expecting from this appointment today?" Naturally, I was confused. What do you mean what was I expecting? I calmly answered her, "We were told we would have our daughter’s diagnosis today." The Geneticist was quick to advice, "The lab will not release results to me since I was not the ordering physician." Looking at Taylor she went on to evaluate her condition. The doctor discussed with me the similarities between Taylor and Pader-Willi Syndrome then said, "Well, I’ll contact you back when I receive the actual results and we can schedule another appointment." What?? How could this still not be taking care of? It’d been five weeks since I had scheduled the appointment!

By this point, I was holding back angry tears. What’s with delay? I can’t take all this waiting! I needed to know if my daughter was going to be alright and having to wait as much as a day more I felt robbed of peace of mind.  More than anything I needed the diagnosis for my own healing process. Later, unaware of my turmoil the doctor simply called and asked, "Could you come in Monday to discuss the chromosome Taylor is missing?" Monday…really? How could she say this to me and leaving me hanging? Why?? Oh wait, perhaps, what they had to tell me was horrible news...yes, that was it. The doctor couldn’t tell me something so awful over the phone, right? And while I sort of understood that, I still cringed, what would I do with myself for five days?! Cry actually. Yes, I cried for two days straight and Googled, in between. Yes…Googled! Well, I just had to know so researching for hours on end about symptoms Taylor had similar to Pader-Willi Syndrome was my therapy except that after learning all the 'what if’s' I was a wreck.  The research had taken a toll on me and by time late Friday afternoon came around I was losing it.  Bawling my eyes out I decided to call the Geneticist’s assistant and asked, "Does my daughter have Padri Willi Syndrome?" The assistant pleasantly answered, "No, but the doctor will discuss with you the chromosome deletion Taylor has." For me that was enough to comfort me for the time being. Since, obviously I could not Google about nothing I knew.
Monday rolled around and Max, Taylor, and I sat in the doctor’s office yet again and this is when the doctor finally explained Taylor’s condition while explaining chromosomes to us as well:  Taylor was missing line 37 on the bottom (referred to as Q) of her second chromosome, hence the reason the condition is labeled, 2Q37 Deletion Syndrome.

That very same day we received a packet that contained all the information the doctor had regarding this very rare syndrome. I will always remember this day, because this was one of many times that Max’s positive attitude shined through; he turned to me and said, "This is good.  We can work with her and Taylor will be okay." He was right, now that we knew what her condition was we now had the roadmap, the GPS of sorts to guide us along the way.  Most importantly, I, we, now had an answer.

I did not cry that day, I actually felt empowered.  From then on in I was going to do everything in my power to help my Taylor live a long, productive, amazing life!

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

Thursday, July 19, 2012

The Guilt...

When we were told that Taylor had major medical problems I immediately felt guilt. I imagined this to be a natural reaction. I mean, here I was following doctor’s orders taking my prenatal pills, staying away from food that I was told to avoid and yet Taylor was ill. Did I do something to cause my daughter’s suffering?? Did I not exercise enough?? Was it perhaps all those bean burritos I ate??  (I really did question that by the way – had MAJOR cravings…lol). What could I have done to cause Taylor to suffer so much?

Then, I thought okay, I know what it is, God was punishing me. Yep, God was punishing me for some not so prudent choices I had made as an adolescent. He was teaching me a lesson. Moreover, I thought He was telling me to stop and value the small things. Was He really teaching a lesson? Of course! Doesn't He always?

So consumed was I with this notion of punishment, that one day while on the phone with my sister Stefanie I was hysterically crying and asked her, "Do you think I am being punished through Taylor for the choices I made in the past?" Stefanie was quick to remind me of a good, humble, God worthy family whose daughter had Cerebral Palsy. She commented, “Jenna, you know Stacy lives a God worthy life, but yet God blessed her with a daughter with special needs just like you. See, He gives special children to special people." Stefanie was so right; I had definitely been humbled without a doubt.

So here comes the day we discovered that Taylor had 2Q37 Deletion Syndrome and obviously the burning question is still eating away at me.  Was it ME that caused this upon my daughter? You can’t imagine the relief I felt when I was told that less than five percent of cases are passed down genetically and according to Taylor's Geneticist 2Q37 Deletion Syndrome had most likely just happened for NO other particular reason than crazy chance. This was MOST comforting to say the least!  That’s when my notion was confirmed, 2Q37 Deletion Syndrome was in fact God's plan for Taylor.

Recently Max and I were given the opportunity to have blood work done that would enable doctors to determine if there is a possiblity that the impacting chromosome may be missing from either one of us.  Now, at this point do we really want to know? What if one of us is missing that tiny line on chromosome two... what if it’s Max? What if it is I??  The way we see it, we’re past the point when it’d make a difference, so we have declined the test at this time.  However, in the event that we do want to have another child we would most definitely have the test done.  Neither Max nor I want another child to have to suffer as Taylor has. 


My Dad told me a while back, "You remember to take good care of my grandbaby because she is an ‘elite’ spirit of God and chosen from the pre-existence by God." I do believe that Taylor is ‘elite’. Taylor is a special spirit of God, and Taylor is without a doubt the most comforting and perfect spirit I know. She may not have all the physical attributes most normal babies have, but she has the highest power by being a chosen spirit of God. He trusted us to love, adore, teach, help, and care for a child of God, to care for Taylor.

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

Thursday, July 12, 2012

How It All Began...

Thanks to the encouragement of my friend, Maria and my sister, Stefanie who told me I should be writing a book, I started this blog. The way I figured given the challenges Taylor and I face on daily basis writing about them is an excellent way to relieve stress and an excellent way for all of my family and friends who see updates on Facebook to now follow along in Taylor’s journey and get the full story here in this online journal. I have in this initial blog entry attempted to capture to the best of my ability the events that have occurred the last nine months, events that have brought me the most pain and the most joy.  I’ll say this experience has made me appreciate and love those people closest to me in way that I never envisioned.

Taylor: I dedicate this online journal to you because you truly live a life that most people would never imagine.


For those who do not know me, my name is Jenna Skousen and am blessed with a beautiful daughter, Taylor Leanne (nine months), and a wonderful man, Max, and his two great kids, Alexus (eleven years old) and Jacob (nine years old). We live in Arizona and seeing how much Taylor sweats these days, I wonder if this is the best climate for her, but with all of our family and friends being here we would not trade that for the world! And seeing as Taylor loves the water, we could always cool her down in the pool.

So, where to begin... Well nine months ago we became the proud parents of an adorable baby girl, Taylor Leanne Alvarez. Taylor was full term, great delivery, seven pounds, three ounces, 19.5 inches, she was perfect! Her birth was by far one of the happiest moments of my life. Shortly after Taylor was born while in the hospital I noticed her breathing was very loud and did not seem right (when they say mother's tuition... they mean it!). So, I talked to the doctor and was told that she had Laryngotracheomalacia (LM), meaning floppy airway, and that after a year Taylor would grow out of it. I was still skeptical, but what did I know? She was my first child and I trusted what the doctors, the experts were telling me. Then we went to Taylor’s first baby check up and posed the same question to her pediatrician, and got the same exact answer. So, she had LM, no big deal, right?


Looking back and knowing what I know now, there were signs. Taylor would slap her arm back and forth from her thigh to her head every time she ate, but don't most kids twirl their hair when they eat or hum?? I assumed it was just discomfort from very bad reflux, typical issue of people with LM. At three months Taylor could still not hold her head up, so I brought this up to her pediatrician. He told me to make sure she did a lot of ‘Tummy Time’.  In my head I was thinking, “Okay not sure how much more ‘Tummy Time’ she can do, but guess 24/7 it is!”

In February when Taylor was about four months old she got pneumonia, so we went back to the doctor’s and again I mentioned that fact that Taylor was still not holding her head up. I will never forget her face as the doctor took her hands and pulled her toward him - with her head still flopping back she just smiled and laughed at him, that’s my Taylor.  She had no idea what was going on, but still the happiest little thing.  So, we scheduled an appointment three months out, yes, three months; neurologist appointment are impossible to get into here in the Valley of the Sun (a worthy piece of advice for you college bound young adults: Neurologists. Now, that’s job security for you!).

So, we went to her well baby check up at five months instead. The doctor gave us the okay to start to feed her baby food, yippee! I was so excited and could not wait to get home to give her baby food by a spoon. I had felt cheated out of the hold the head up milestone so you can only imagine the excitement I had knowing that my little girl would be eating baby food with a spoon! I was prepared.... me loving coupons bought tons of baby food and had them all ready to go with baby spoons and bowls. Then to my shock and disappointment, she would not eat it.  Taylor would actually drool, spit it out, and it would literally take an hour to get her to eat a quarter of a small jar.  I was convinced I didn’t have the foggiest idea how to feed a baby, I mean there had to be something wrong with what I was doing; everyone knows how to eat, don’t they? Ha! How naive I was! So here I kept trying and to feed her for another week or so and it wasn’t until I fed her rice and she threw up everywhere that I realized something was really wrong. I remember it was at night and I was alone and anytime your child throws up it just wears down on you, at least for me it did. So I called her pediatrician and he said he would send a referral for a ‘swallow test’. Cool, no problem, ‘swallow test’ here we come!


March 15, 2012 will be a day that will live in history as a day that I’ll never forget as it truly changed my life, and made me a better mother, partner, friend, and person. I arrived at Phoenix Children's Hospital (PCH) an hour early as advised, and we got called to register. So, I sat talking with the intake lady, signing paperwork and such and was then told, “Okay, well that will be $1462.”  “Ummm, excuse me? Did you mean fourteen dollars and sixty-two cents?” No.” The lady replied, “Fourteen hundred and sixty-two dollars.”  Now, why on earth would I be paying so much for this simple ‘swallow test’? I asked myself. Then the lady explained that I would have to pay that plus 10% of every procedure. I knew Taylor had to still see the Neurologist, so I was calculating in my head thousands upon thousands of dollars. Now, keep in mind I had only talked to her doctor over the phone…so was this truly the only solution there was?? For someone who worked at a Children's Hospital, the registration women had no compassion whatsoever, she said, "You know people have put you in their schedules and you are wasting everyone’s time." Her calloused words I will never forget but I had to think, was she right? And was it wrong for wanting another opinion?

Now, if you know anything about me you’ll know that I cry at the drop of a dime. So, in true Jenna Skousen fashion I began to cry my eyes out.  Then, just as I am getting up to push Taylor out of the hospital a manager and a nurse from Radiology come out. Mike, the manager, began to tell me that any financial issues would be worked out and Taylor would get the test done. Then, I was explained the correct financial obligation per my insurance that was much more manageable.

Approximately ten minutes later the manager and nurse expedited Taylor to the back. And there were four women in the room and they were all looking at a screen as I held Taylor's wobbly head up. Then, she was swallowing different thicknesses and all the nurses just gasped in horror. I asked if everything was okay and they said, “No, this is not going how we were anticipating.” I tell you I have never felt so alone in my life and I began to wail all the while holding Taylor as steady as I could. They tried three types of thickness then a nurse said, "Stop. We cannot put her through this any longer." They explained to me that as Taylor swallowed it was mainly going to her lungs called Aspiration. I never took a second to even listen to the word aspiration or what it had meant before this.  As they explained that Taylor would have a tube put down her nose to feed and that she would no longer be able to eat anything by mouth I began to bawl, I was so devastated.



Soon after Taylor was admitted in the hospital, Max, and our family were there to support us. That first day about six doctors came in to see her. She had IV's, MRI's done, blood work taken, then doctors, nurses, therapists and other professionals constantly were in her room. I have never cried as much as I did that week. But, I KNEW that God had a plan for us, a plan for Taylor.

Since, that day our lives have completely changed. Six weeks after our stay at the hospital we found that Taylor has what is called 2Q37 Deletion Syndrome.  2Q37 Deletion Syndrome is a very rare and unique syndrome that has affected a reported 100 individuals.  Pretty crazy, I know! Our common joke is that we should have played the lottery because we had better odds.

Taylor currently suffers from gastrointestinal difficulties, reflux, frequent vomiting and pneumonia, chronic diarrhea and coughing, small feet, aspiration and sucking problems, eye issues, asthma and respiratory issues, sleep apnea, eczema, LM, hypotonic, torticollis, developmental delays, minor heart conditions, misshaped head, and will be continuously monitored for Wilms Tumor (cancer) in her kidneys every four months. We also have been taught what to do in the event of a seizure. Taylor will also be supervised for mental impairment and autism as she gets older.  She seems so incredibly bright right now that we are not worried about this at this stage. 

We have appointments numerous days a week, hospital visitations and stays, surgeries, and TONS of testing. From a few doctors we are told that Taylor has this issue because of this, that, and this going on and there is not a way to solve all of them by just surgery. So, will she ever grow out of it? I think most of it yes. Her life will always involve doctors and hospitals, medicines and constant tests of course. But, I know she can handle it and it is my mission is to help her to become the best person she can be.

As for me, people often ask, “How do you do it?” “You're a saint.”  I used to think wouldn’t any mother do this for her child?? But I’ve seen so many adopted kids with health issues, I now think, maybe not all mothers are willing to live with the constant heartache and responsibility. And to be honest, living with a sick child is stressful enough, but living with a child whose condition is yet rare at that is a daunting task and certainly not an easy life. But yet I marvel as all of Taylor’s little accomplishments.  It is extremely rewarding when Taylor finally accomplishes a task that for most ‘normal’ children is just given. For example, when Taylor held her head up on her own at six months I wanted to shout out to the world how proud I was of her!

Taylor has accomplished so much in this little time she has been here and has shown how hard she works for it all. I consider myself fortunate to be Taylor’s mommy and extremely lucky to have her in my life. Truthfully, I do not know what it is like to have a "normal baby” this to me is normal and it is our life. Would I take her pain away? OF COURSE in a heartbeat. But, I can't and to dwell on that I would miss so many great memories. I am blessed, every day I wake up to a sweet, smiling spirit who adores me. And I too adore her.

My new motto in life... "Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault

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