Tuesday, March 21, 2017

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.

Image result for enjoy the little things quotes

**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

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