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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 s…
Recent posts

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 …

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…

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 u…

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 li…

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 …