What a difference a year makes. When I think about the holidays last year I remember Christmas day being awesome and so much fun with Kensley, but the entire rest of the time was filled with sadness, worry, depression, more sadness and denial. It all started the day before Thanksgiving when I got the call that there was a "mass" on my babies hear that they saw in a 3-D baby Ultrasound we did. Then we found out it was Tuberous Sclerosis for sure a few weeks before Christmas. It was hands down the worst holiday season of my life.
When the holidays came around this year I had no idea how I was going to feel. If the memories were going to make me sad all over again, or if I would be so happy that my precious baby is here and is doing freakin awesome! I did both. During Thanksgiving I did the whole 'wow! Can you believe it was a year ago I got the call about Kallan" thing. Then after Thanksgiving I was on Facebook with Ben and saw a post from a TSC mom of a girl that is just a few months older than Kallan. It said " F U seizures! Leave my sweet baby alone". This poor baby who has been having hundreds of seizures since birth had just had her second brain surgery 5 weeks prior. She was seizure free for the first 5 weeks after the surgery and was becoming verbal (saying da da) for the first time at 14 months. Then out of nowhere has a massive seizure. When I saw this I just lost it. It broke my heart for this sweet baby and for her poor parents. (Please pray for them. Her name is Bella) I was so sad for them, but then a little part of me felt guilty that Kallan is doing so well. And an even bigger part of me felt worry and fear that this is what is to come for us. I brag often about how awesome Kallan is doing, but I have to remind myself that it is still SO early in her life. The first year is probably the most critical, so the fact we have made it 11 1/2 months seizure free is huge. But, a lot of kids seizures don't start until they are 18 months - 2. So, I worry that they will start and this year and I will be hurting like that mom is soon. I hope and pray that is not the case, but I still have to mentally prepare myself in case it does. I was wondering tonight if the worry I have all day every day will ever go away. Not a single day goes by where I don't think about it, or see her make a sudden movement and freak out that it is a seizure only to realize she is just being silly and playing with her sister. I worry every day that this could be the day that all hell breaks loose and I am coming to the realization that I will probably always worry like this even when she is grown. It is just a part of our lives now.
So, I cried for about 5 days and kind of relived all my emotions from last year and felt sorry for myself and for Kallan and then I moved on. I don't break down a lot. I try to keep in tucked in the back of my mind and not let it out if I can help it. But, once every few months I just have to get it out and to be honest it makes me feel so much better once I do. I feel like I can conquer the world again once I am done. And that is how I felt going into Christmas!
We got the house all decorated for Christmas and it looked so good. Then I sent Ben out to get a tree and threatened him that if he came back with another Charlie Brown tree like he got us last year that he would be in serious trouble. It worked! He came home with the BIGGEST Christmas tree I have ever seen. It was 12 feet tall and super fat! It was perfect! He did so good! We got that decorated and it was on. We were ready to celebrate Christmas! I think we made a fire and sat in front of the tree and played with our girls every night the whole month of December. Every time Kallan made a funny noise, danced, laughed, made funny faces, gave love (she bumps foreheads with you when you tell her to give love) or was just being Kallan, Ben and I would look at each other with happy tears in our eyes and say "we are so blessed". Blessed is the perfect way to describe how we felt this holiday season. Happy and Blessed. Not one day goes by that we don't thank God for our sweet baby Kallan and for the fact that she is doing so great.
Christmas Eve and Christmas Day were absolutely perfect. Kensley is at such a fun age for Christmas. She gets so excited for Santa to come and loves making cookies for him to eat when he comes to her house. We had an elf come stay with us for a whole month to watch Kensley and Kallan to make sure they were being good for Santa. His name was Fred. I LOVED Fred because every time Kensley was about to pitch a fit, all I had to say was "Fred is watching" and it stopped the tantrum in it's tracks. I really wish they would make an elf that stayed all year! Kensley was sweet. Instead of telling on Kallan when she was bad, which she can be sometimes! She is a little stinker! :) She would tell Fred how "precious" and "sweet" her baby sister is and he would tell him to tell Santa she wanted a doll and a rattle for Christmas. She LOVES her baby sister. It is the sweetest thing.
Christmas Day was great! We had both sets of grandparents here and the girls had more presents than they could even open in a day! We went a little overboard, but it was so worth it. Kallan is too young to understand Christmas, but she still loved it. Our house has been taken over new toys! The best gift they got was a huge bounce house from my sister! It is awesome! The best gift ever! We blow that sucker up two or three times and day and let the girls wear themselves out. Kallan loves it as much as Kensley. It's all she wants to do now. When she is sitting in your lap she grabs your hands for balance and starts bouncing. She can't get enough of it.
Ben and I left a few days after Christmas to go to California to watch TCU play in the Rose Bowl. It was a great trip! We got to see Aimee for 3 days and best of all TCU won the Rose Bowl!!!!! Go Frogs! It was such an amazing experience to get to go the Rose Bowl. But, by the end I was missing my babies and ready to be home! They were in great hands though. They got to stay with their Nene and Papa (my mom and dad), so I don't know if they even missed me!
So, after a very happy holiday season we are now looking forward to celebrating Kallan's 1st birthday on the 21st! I really cannot believe it has been a year! What a great year it has been!!!! A year of many blessings, that is for sure! We feel like the luckiest parents ever.
Developmentally Kallan is still doing everything she should be doing. She pulls up on everything and is getting very close to walking. She waves bye bye, makes kiss noises when you ask her for a kiss, holds the phone up to her ear and says hello. She says Santa, hello, no no no no (she hears that one a lot), mama, dada (total daddy's girl!!!!), Papa, Tana, bad bad bad (to the dogs), jump, hi, hello. She says woo woo when you ask her what the doggies say. She is a turbo crawler. If you look away for 2 seconds she is gone! And into something she shouldn't be and when you catch her she gives you are cutest smile and says "no no no". Such a stinker!!! She is starting to repeat everything you do. She especially likes to copy her sister! She loves to dance and sing. When I put her to bed at night she will hum with me while I sing. If I stop sing she will hum a little louder to get me to sing again. It is my favorite time of the day.
P.S. Check back next week for my post about the new drug that has been approved by the FDA that shrinks the tumors in kids with TSC. It is huge!
