2Q37 Deletion Syndrome
Taylor: I dedicate this online journal to you because you truly live a life that most people would never imagine.
Sunday, July 30, 2017
Seize the Day
Thursday, April 27, 2017
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.
Saturday, April 22, 2017
Genetic Testing - Part 2
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.
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!
Tuesday, March 21, 2017
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
Monday, March 6, 2017
Genetic Testing - Part 1
Thursday, December 3, 2015
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!
Wednesday, August 26, 2015
Saturday, February 15, 2014
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
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
Saturday, May 11, 2013
Is It Freedom of Speech or Just Plain Rude?!
Thursday, January 10, 2013
2Q37 Deletion Syndrome Hike for Cancer
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
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 :)