Seize the Day

What is it like holding a child - your child - during a seizure?? In my case, the scariest, most confusing thing. You're helpless, but you have to be so strong, and even though it's just a moment, it seems to never end!! I don't wish it on anyone and I still cry every time, no matter how many I have held her through. With Taylor, she does not have the typical convulsion seizures. Those are the only type we think exist - well at least I did until Taylor came into our lives.

Taylor has drop seizures. Meaning she goes limp or stiff and will drop. The pink helmet came about when she was almost 3 years old and we were at the park for a party. As she was coming for a balloon I had, I could see her falling flat back but, too far to grab her. As her head pounded into the concrete with a noise so loud I'll never forget, I thought for sure there was unimaginable damage and how I was right there, how could I have not caught her? With seizures they can come at a moment's time with no warning for Taylor. And it seems like each seizure is different from the others and each seizure I learn something new of how her body is.

This last seizure lasted some time. Seconds seemed like minutes and minutes felt like hours. At first, I thought she was dozing off to sleep, but realized her eyes were wide open. I held her and asked if she was okay, but typically she doesn't respond to her name the first time, so that didn't help. I snapped and she would blink which, usually did not happen during a seizure, so that threw me a curve ball. But, I know Taylor and I knew something was wrong. As I picked her up to hold her, I could feel her head was stiff and she wouldn't move. That moment her body loosened and her arms went around my neck, I sighed in relief that she was okay. It was like delivering a baby - finally the hard part was over and you could hold your child close in your arms.

So, what's it like? It's something I hope you'll never have to encounter. It's like Everything happens so fast in such little time. It's like you're falling out of a roller coaster. It's unexpected, everything around you is still moving but, all you can think about is holding on. Trying to stay calm that you don't let go and make it to the end. It's like holding your baby lifeless in your arms. It's like in seconds you have to decide to be brave and tell her it's okay. It's like a nightmare turned into reality.

And of course shout out to Jessica Gould for editing! Be sure to check out her book, "Shallow Foundations" on Amazon at https://www.amazon.com/Shallow-Foundations-Jessica-Gould/dp/1500450642/ref=sr_1_2?ie=UTF8&qid=1488852139&sr=8-2&keywords=jessica+gould

The OCD's

Many of us can say we have a quirky OCD or pet peeve like cleaning or having the toilet seat down... but, what happens when your life is literally revolved around it? I often wonder what is going thru Taylor's mind as we witness daily her constant OCD's that she truly cannot control. Imagine hearing about the same thing over and over and over - roughly 200 times a day for weeks on end. It is funny and cute at first like, her learning all about pool vacuums but, then just becomes exhausting. Or imagine trying to deal with a behavior that is harmful but, the more you react the more it is done. This is our daily life. Taylor does not feel pain so when, there is something she can feel she tends to keep doing it excessively.

Currently, one of Taylor's OCD's involves biting her finger nails completely off. It kills me inside and I get so many - you should do this or that or this and well.... I wish it was that easy! Right now we have to distract her and hope she stops but, we also have to accept that when she stops one OCD she will be onto another and we pick our battles.

For a while Taylor's OCD was to say the "F" word... and I mean in every situation but, sadly I preferred it. Why? Because the alternative was having Taylor digging into her eye or digging into open sores. At least with the language it was a word and would not be harmful to her body. So, I took the judgement, the stares, the comments, the parenting advice, because I knew what the alternative was. We have since gotten past that OCD but, I know it will be back. They always come back.

So, sometimes when you see a child and just wonder, how does that mother allow that? Just know, that it might be her only option at the time. We are so quick to judge parenting skills and decide who is better but, forget that all of our children are different and unique in their own special ways.

Genetic Testing - Part 2

FINALLY! The day had arrived. In reality it had been over five years of waiting for this test to be done. Then, not to mention the unanswered doctor appointments we had been going to for the last 8 months. When we were first told the test was an option we were afraid that one would blame their-self or we'd blame each other. But, after time settled we accepted that we had no idea! How could we have known?? So, whether we caused Taylor's syndrome, I had to believe it was meant to be and that was God's plan.

It was an early rainy Tuesday morning that Max and I went into the doctors to get our blood drawn. We had asked for some alone time so we could say a prayer... obviously, I am hoping and praying that we are not carriers for Taylor's syndrome and wanting to be completely shellfish! But, believe it or not (haha) I have learned that I have to be careful what I ask for - like... with Taylor I was just determined that all I wanted was a girl, well I got my girl for sure. So, Max being the leveled one in the relationship prayed that we would be strong, that the test would work and we would understand whatever the results were, were meant to be.

Max decided to go first and I thought he was going to pass out! lol He does not like needles at all. As I watched him and snapped some pictures he'd kill me for taking, I fell more and more in love with him at that moment. He was 100% by my side for us! For us to grow our little family and possibly give me that second child of my own I so desperately wanted. See, Max has two older children so, with Taylor that made three and well to most, that's the perfect number of kids, right?? But, it is hard in a separated family and even though I love Jacob and Alexus as my own, I am still not their mother nor will I ever be. They have a mom who loves them unconditionally. So, it was important for me to have another child of my own. And like I mentioned in part 1 - we just weren't passing off as 5 year old with Taylor.

I then took the test and we were out of there... it only took about 10 minutes and one large vial of blood each. We left, me feeling anxious, excited but, terrified at the same time. We were told it would take about 2 weeks to get the results. I stalked my phone just hoping they would have an answer sooner and call with results.

The call finally came and we were told... we are NOT carriers for Taylor's syndrome!!! I was relieved and then, with close family who we told immediately, I was asked, "How did Taylor get it, then?" We do not know. Thankfully for me, I believe in a higher power and believe that every now and then we need angels on earth to remind us of how precious life truly is. And well, Taylor definitely is my angel on earth!

Those Times

Now that Taylor is 5, I have had a lot of days to get the hang of the new life I never imagined I'd have. Thankfully, I do not cry like I did for the first couple years and I actually get out of bed and shower (yes that was reality for me after Taylor's diagnosis). But, every now and then I still have my moments. Like last week at Taylor's gymnastics, I was watching a team of girls, the youngest being about 3, practicing their cheer routine. I had to hope no one was noticing the tears filling my eyes as I watched how these little girls stood still, they listened, even in a group setting. They did their jumps and took their spots correctly. It completely blew my mind! That was normal... my life was normal to me but, is far from it. All I could do was put on my big girl pants and know that Taylor will get there someday at her own time.

Photo Credit: Victor Moreno

Taylor has been diagnosed with ADHD as well as many other behavioral problems known for her syndrome. For her to stay still it is extremely hard and you can see she cannot help it. We like to say she bounces off the wall because literally she does and now with our new dog they are starting to bounce off me too! We struggle daily with her attention and working with her to stay focused on one task for a longer period of time. Sometimes she will get it and other times it's only seconds until she is onto something else. I have yet to learn how to keep it consistent. We have an excellent support team, between her Behavioral Pediatrician to teachers, therapists, nurses and even to some amazing members at our church who have been so helpful to implement a plan for Taylor.

It is hard at times when you see other kids her age writing their name or even sentences and it's like how??!! Is it me as a mother? Am I doing something wrong that she cannot do those things, yet? But, no that is just Taylor. Taylor will do things at her own pace, in her own time and there will be things she may never be able to do but, I do know, if I pondered on the things she cannot do, I would have puffy eyes and miss out on all the amazing things she can do like a champ!! For example, her memory is beyond incredible and the girl started swimming at 3!! Then, her ability to light up anyone she comes in contact with and just has that special touch. My favorite quote by Robert Brault says, "Enjoy the little things in life... for one day you'll look back and realize they were the big things." This quote changed my life when Taylor was young. I did not want her to miss out on being the best she could be because I was saddened about what she would not be able to do AND tons of the things we were told she would never do, she has done! So if we only pondered on the what if's or the things that go wrong, we will miss out on all the amazing things that go right everyday in our lives.

**A big special thanks to Jessica Gould for helping me edit! Check out her book, "Shallow Foundations" on Amazon at https://www.amazon.com/Shallow-Foundations-Jessica-Gould-ebook/dp/B00OWA339Y/ref=sr_1_1?ie=UTF8&qid=1490110054&sr=8-1&keywords=jessica+gould

Genetic Testing - Part 1

I have often been asked, "Would you have another baby?" To be honest, my initial response was, "HELL NO!!" I was scared - actually more like terrified. I felt like I would give more attention to one child and not enough to the other. Plus, "what if" we had another baby with 2Q37 Deletion Syndrome? All of these are possibilities, but would they be the reason we just stopped with Taylor?

For those who know me, I do not stop because I am afraid. It's pushes me more than anything. Well, as Taylor has grown, I have watched her and her yearning to play with other kids (mom and dad just ain't cutting it anymore). I'm saddened for her that she only gets the every other week with her half siblings. Even then, the age gap is far beyond it to be a constant fun and entertainment for them both. So, now the hard part - genetic testing!

There was no way I was going to knowingly have another child with the same deletion as Taylor. So, I called my primary to consult on getting genetic testing done for Max and I to see if we were carriers. Of course they looked at the name of her syndrome and ran the other way! Then, I saw my OBGYN who just did not feel comfortable with ordering the right test (like... a future child's life was on the line) so, she referred me to another doctor who then, referred me to more advanced genetic doctors (all while charging us their outrageous consult fees). I got to the point where I would not even have Max come because it was just the same thing over and over and no answers. I was devastated, mentally exhausted and quickly brought to a reality check.

I heard in church that our trials are to teach us and not there for us to feel sorry for ourselves. After the meltdown I had a few days prior after leaving my eighth doctor appointment that went no where, it was exactly what I needed to hear! What was I to learn from all of these doctor appointments? Why was I not getting the answer I so desperately wanted? At that point, it was not even about whether the results were good or bad but, just to get the right test to at least have an answer.

I decided I was to learn. I learned that my husband was absolutely amazing and supportive even though, I subconsciously was terrified he would not be on board. I learned a new compassion for those who can't have children naturally and the heart ache they feel. I learned that Taylor was absolutely amazing yet again! That if God only granted me one child, at least he granted me one. I decided to count my blessings instead!

My heart goes out to those mothers and fathers who are so desperately trying or desiring for a baby. And I am sorry for your pain because I know the frustration, the tears, the unknown factors and the costs you are enduring time and time again. The abandonment you feel and the, "Why is it so easy for everyone else but, can't be for me?" You are loved and will forever hold a dear place in my heart and I hope you too will find a way to count your blessings.

**Tune in for part 2 in upcoming weeks! And shout out to Jessica Gould for editing! Be sure to check out her book, "Shallow Foundations" on Amazon at https://www.amazon.com/Shallow-Foundations-Jessica-Gould/dp/1500450642/ref=sr_1_2?ie=UTF8&qid=1488852139&sr=8-2&keywords=jessica+gould

Be Strong!

I remember a couple years back it was Halloween and Taylor had Pneumonia again!!! I was mad, I was frustrated and felt like everything I as a mother should enjoy with my daughter was being ripped away! She seemed to always be sick or delayed and not hitting her milestones.

That night I decided to take Taylor out trick or treating anyways, even if it was only a few houses. But, I needed that to help us both be stronger!

That's all you can do is accept what your life is and work with it the best you can! Now, Halloween is such an awesome time for us!! Taylor is actually still trying to go to the store to get a pumpkin - even in December lol I promise it gets easier! Time will help and each little task you do makes you stronger. Always be the example to your child because no matter what you'll be their hero! Only you can help them be amazing and the best they can be!

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.