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