My name is Tiffany and my husband's name is Jarrad. We are just your average married couple and live in a very small town (that I love). We met when we both worked at a theme park in Branson, Missouri called Silver Dollar City (a Christian based theme park). I was in one of the shows and Jarrad ran the sound and lights for one of the other shows. We have now been married for 5 years. It really doesn't seem like it's been that long!
I got pregnant the beginning of 2008, had a perfect pregnancy, and we had our first baby (and only child), Emmalin the end of October. I have to say that I never knew that a baby could be that beautiful! Emmalin seemed completely fine, besides the fact that she would cry A LOT! When Emmalin was 3 weeks old I noticed her doing some things that I didn't think were normal. I waited another day, trying not to be the first-time-mom that was just freaking out over every little thing. So the next day after she had a couple more of these "things", I took her to her pediatrician (who is awesome). She confirmed my worst fear (but in my gut I already knew it was true), that what Emmalin was doing wasn't normal and so she sent us to see a neurologist. When Emmalin was 5 weeks old, Dr. Arie Ashkenasi told us that Emmalin's EEG showed that she was having seizure activity in her brain. When you hear something like that, as parents, your hearts sink. All you want to be able to do in life as a parent, is fix whatever it is that is wrong with your child and make them feel all better. When something happens to them that you can't fix, it makes your "heart sink". Our baby was only 5 weeks only and we were finding out that she had seizures, this would be the first of many "heart sinks".
Even though there have been a lot of hard times with Emmalin, there have also been SO many amazing ones too! In this blog, I hope to really focus on the good things. In life in general, most of the time I have always tried to be one of those people who looks at the glass as being half full. When I had Emmalin, and started learning about all of the challenges that we were going to be facing, I knew that I wasn't going to have a choice but to be one of those "half full" people, especially in those times when I may not feel like it. If I didn't do this, I knew I would be crying all day, everyday! What good was that going to do anyone? So as each day comes, I try to find the positive in the situation. Believe me, sometimes it's WAY harder to do than other days! If Emmalin has had 6 seizures that day, that night I pray to God and thank him for her not having 7. I also pray that the next day will be better than the last. Anyway, I'm not telling you all of this stuff just to be a major cheese ball. I just want you to know that yes, I do have hard moments and/or days. When those happen, I pray a lot, have a good cry and then try to move on to something positive. I just don't see the point on staying so focused on how bad things are for you when there is ALWAYS someone out there who has it worse! God is SO good! I am a firm believer that everything happens for a reason and that everyone is put in this world for a purpose. I know that God has a plan for Emmlain's life. She is the most amazing little girl that I have ever known and I am so proud to be her mother!
You did an absolutely amazing job on Em's blog...I love it. You included some great information regarding the CDKL gene deficiency as well as describe everything currently going on...thank you!!! I really enjoyed reading her blog and I am so excited to attend the fund raisers :)
ReplyDeleteLove you Tiff!!! Emmalin is SO lucky to have you as a Mommy! I'm so proud of you! (And TOTALLY heartbroken that we don't live closer to each other!!)
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