Monday, April 21, 2014

Easter

This past weekend I was reminded of the greatness of our God. Did anything big happen? No, not really anything at all, but goodness happened and that will always be my favorite reminder.
This past weekend I was able to see friends I haven't seen in awhile. I was able to go hiking with dear friends and enjoy breakfast with them afterwards. We were able to have friends/neighbors over for a big lunch and sit outside laughing and talking while all our kids got along and played inside. It was like they weren't even there. Until we came inside. Ha. Totally worth it. I got to go out to dinner with just Andrew and Lily. That never happens. We dyed Easter Eggs. I got some alone time, cleaned out closets. Got a pedicure. Found the best fitting jeans in all humanity for the cost of 4 lattes at a consignment shop. We got to spend hours enjoying my sisters cooking and my families company just laughing and telling stories. And although Lily had a bad seizure Saturday, she had a wonderful Easter Sunday. No big seizures at all. Oh what a day it is to have no big seizures. No long naps, no drooling sleepy kid. No refusing to eat or drink. Oh what a day. Oh what a weekend. 
Goodness. Goodness all over. A friend coming to the rescue with a medication we ran out of and thought Lily wouldn't get another dose til Monday. Andrew's parents being able to spend the weekend with us and the kids got fun Easter baskets. Church was soul filling as always. Being with my parents, Andrew's parents, my sisters family and my brother and his girlfriend all together was soul pleasing. 
I went to bed last night with this peace in my heart knowing that our life is good. It is so good. We are surrounded by good people. Honest to goodness, good people. And when you are lucky enough to be surrounded by good people, you can't help but remember just how good our God is.





Tuesday, April 15, 2014

The Road I must Travel

Awhile back our board (IFCR) received a request/invitation for one of us to attend a conference a family was holding in Albuquerque, NM. Considering our board consists of folks much further east of New Mexico than I am west of it I said I'd go. Not having a clue as to what I was going to do or say, I just thought 16 hours in the car alone sounded a lot better than listening to another fight to be had by Andi Jane and Oliver. So I made a power point, first one ever and stole borrowed Andrew's laptop and I got in the car and left.
Ha. Well actually I made sure Lily had all her meds refilled, wrote out each time of the day she gets said meds, left notes about foods for the kids and the dogs, made sure the kids were all accounted for and respite was in place when needed and then made sure everything at work was handled ...and then I left.
The ride was long. I had previously asked my facebook network for some good book suggestions to listen to on the ride up and I got a lot. A lot. A lot. Many I had already devoured, and many I had to add to my list for later, but it was the book I was advised to NOT get to listen to in the car because the tears it will cause may hinder my driving, yes that was the one that won the game for me. I may be sadistic, but if you promise me an ugly cry I am there. Except for dog book/movies. That is a different ugly cry that I am not ok with. Have you ever seen Hachi: A Dog's Tale? I was in the fetal position for about 3 days. I don't recommend it. But yes, I like to get my emotions out on fictional characters that aren't real. It's just how I roll. So I got Me before You. And this isn't a book review post, not sure how I got so lost here. Anyway I didn't even hit sad to back at home and back to work and back to no more 4 hour stretches of aloneness. But it is good. Super good. Can't finish at work. I'm a sobbing mess. And that means good book. 
Wow... ok back to the road. I made it to Albuquerque in 7 hours with only one stop. Who's the woman? Me! And I got put up in a hotel and I sat in the hotel lobby/bar/grill/ had a beer and a steak wrap, then took a bath and fell asleep by 8 pm. That is how I roll while alone with have no rules. I'm Willlld! (Dirty dancing friends feel me?)
I was up early and left super early to make sure I knew where I was going and was so early I got to cruise Albuquerque. Pretty sweet. Saw some hot air balloons, saw some.. houses. Yup, it was sight seeing heaven. 
Get to conference and made sure I was set up with the audio system. So new to me this whole thing was. 
I met the family putting the event on and they were so sweet. So inspiring! I was so impressed to see a family and community all rally together for Juanjose who has CDKL5 just like Lily. They have "angels" who volunteer at their events and this was an informative conference about CDKL5 and a thank you to those who help them out. I was honored to be a part.
I got to share our story and our video CDKL5 and US which I know is getting pretty old, but we are at over 18,000 hits! It is a great tool to show Lily's story in a way much cuter than I can tell it, and I shared about how the IFCR was born and being a part of the board and it was over before I knew it. I stayed and listened to others and really enjoyed meeting everyone and taking part and helping where I could. It really was a great event. I was honored to be a part. I also got the pleasure to meet Juanjose and Max, two CDKL5 boys that melted my heart. 
I was back on the road at 11 am and was in Greer by 3 pm and straight to the cash register I went to help my mom. Nothing like working the store. THE store, the only store in a tiny town. It really is something so foreign to me who grew up in a pretty large city. So fun, so much chit chat, so much gossip, so much fun. Plus I got to spend 3 hours with my mom. Just her and I (and the random customers that came roaming in and out) and that doesn't happen much these days. I relished it. When we closed we went out to dinner with my parents friends and we laughed all night. It was great. Then we had breakfast before I headed out back on the road and home to my fighting children. 
I know that was a serious play by play that may come across unnecessary, but that's ok. This is my blog, my memories, I will come back to and read over and this weekend was really special and I wanted to take note of it. I also wanted a good picture of my parents and me but that didn't happen. But as I have been told, the world is not my wishing well.

Monday, April 14, 2014

Seizures... always seizures

Johnny Rockets, a luau birthday party, church. All places we attended a few weekends ago. All places Lily had seizures. Big nasty seizures.
It was in the mid 70's that weekend, it was lightly overcast and Arizona was showing us spring in true perfection. We wanted to be outside, we wanted to enjoy the time as a family. And we did. But always in the background is the looming seizure monster. He is always there just to take away our smiles, to bring us that sense of reality when all we want is to be, dare I say ..normal.
I have said since Lily was an itty bitty that I'd take it all, the wheelchair, the delays, they everything, but the seizures... Oh how I despise the seizures.
She is a zombie. She takes 4 heavy duty meds, all high doses and she is a zombie. Then she has seizures still on top of it all and she sleeps and drools. It isn't fair. I am not OK with it, yet I have to be because nothing seems to change. Nothing ever changes. Med changes will help for a short period of time, but the monster always comes back and he just comes back harder and harder. He has no care in the world where we are. He thinks "Oh they are having a nice family outing, let's stop that."
We are desperate to stop this monster and willing to do whatever we have to do to stop him in his tracks.
Lately we have been trying to catch a seizure on video for her next Dr apt and we keep missing them from the start so while out at lunch Lily started her pre big seizure (small seizure of jerks- that is my medical terminology of course) and Andrew started filming, not knowing for sure if she was going to go into a big one or not and then boom, seizure.. while ordering our lunch.
I hesitate to show this video for many reasons firstly, I really only like showing the pretty side of Lily. The smiles, the calm gazes, the 1 out of 80 photos that looks its best. We have always felt Lily has enough going on, the last thing we need is people staring at her for looking "weird" or whatever so her internet face is a picture perfect one. And I am not ashamed at all to say that. I will show you any ugly angle of myself any day, but not her.
Secondly, the internet is full of offensive jerks who hide behind anonymity and find happiness in others great sadness, we have felt true evil from strangers via You Tube comment on a sweet video of Lily taking steps with her therapist. Therefore a video of her seizing is welcoming these evil people to come back into our world and that scares me and thirdly, this video in particular, we are ordering our lunch. While our daughter is seizing. That seems pretty awful. Except for this is our 11th year of dealing with daily seizures and it is a reality of our every day life.
So I guess I feel like after sharing all the reasons why I didn't want to post this video, I will share the reason why we want to share the video.
This is our life. This is the life of many other families. This is the ugly side of a very ugly disorder. This is our reality. And when we hold fundraisers or ask people to vote for IFCR or say a prayer for a friend with CDKL5 that is suffering, this is why. This disorder robs us daily. Daily of family outings, any type of normality, Lily won't ever be able to ever succeed in any therapies or any life skills if this reality continues.
We need something to give. Something to change. We need more Doctors on board with CBD trials and lawmakers to understand that there are some real healing agents in medical marijuana and although we have yet to get our hands on what Lily needs, we will continue to look into this more. Or try harder to find what needs to be done to help calm seizures in Lily and kids like Lily.
So this is the video of our sweet Lily having a lunch out with her family and having the seizure monster ruin it. And seriously, ignore the talking. We truly are ordering lunch. And there is super loud Johnny Rockets jukebox going on. And a very bubbly waitress.
It's our life.
Life in all it's messy, complicated, life like stuff we deal with.

*Updating due to the amount of people not able to see the video, I did post this to Youtube I tried to set the settings as private as possible, if I feel this was not a good idea I will remove*







Popular Posts