It's Monday. It definitely feels like a Monday around here. I'm mentally and physically tired.
On Saturday Lynlee and I got up and ready and headed to Harman with Heather. The craft show/bazaar was fun and the potato bar was yummo!! However the highlight of the trip had to be Lynlee seeing the cows. She talked about them all evening.. Tried to moo like them!! A trip back is definitely necessary!
Yesterday was a ummm different day I guess I can say. We decided to get out of the house and take a trip to Clarksburg. We had some gift cards from Christmas to use and needed a day trip somewhere. However, Lynlee was in rare form. She started crying before we even got there and the kid loves to travel. She said she was hungry so we went to eat. The whole thing was a fight. Her food was hot, she wouldn't let me blow on it and help her, she wanted to do it by herself... do you see where I'm going with this. I've never been so close to walking out of a restaurant in my life. She just wants what she wants when she wants it.. I hear this is typical 2 year old stuff.. And the whole ordering food is new to us and she just wants to eat.. Sigh...
Long story short we passed on the mall hit up a few stores and came home.. She is was in very rare form. She was a tired toddler and we were two aggravated parents.
After we got home last night I checked my email and had one from a lady that had found me on the UCD group on facebook. Asking about Lynlee's story and transplant journey.. As I sat there and told her about it all those memories and emotions came back.. I try not to go back to those first day. They are so hard. The days of fear and the unknown were the worst days of my life. I know it's good to go back every now and then so I don't forget (if that's possible). And I know that unfortunately this won't be the last time I told Lynlee's story to someone that has a child with this disorder. It's just our beginning.
As I laid in my bed last night crying because of the emotion of the day and the fact that I'm so thankful she's still here with me, I felt like a terrible parent. I had been very impatient with her yesterday. She was just tired and I wasn't great. I wish I could take yesterday back and be a better mom to her. I was texting Heather (have I told you how great she is!) when she told me.. that one I'm not a terrible parent she needs discipline and..... that it never fails something brings us back to where we need to be.. and that it was okay to go in there and sleep with Lynlee and hold her tight.
And she's right. Every single word of it.. I swear God knew I needed Heather in my life long before I did.. Isn't it crazy how people end up in your life and you don't know what you have ever done without them...
I didn't get much sleep last night. After all of that Lynlee needed blood work this am so I kept pushing water in her all night (the advantage of the G-Tube) so her veins would be good and hydrated. We left for blood work around 7:30-7:45 and as we were driving I told her we were going to the hospital for blood work. She stuck her lip out quivering and huge tears dropped off her cheeks. I'm not going to lie. It tore me up. I pulled into the parking lot of the hospital crying. Hating life, hating the hand we were dealt and asking God why my sweet baby girl is going through this. They got her blood with two sticks. And as long everything is okay we will go again in a month. We've tried a few different times telling Lynlee were she is going and then not telling her. She actually does much better when I tell her even if it does break my heart.
On another note most of her labs are back and everything is perfect.. The EBV (the main reason we had labs today) won't be back until Wednesday and then her prograf will be back Thursday.
We have a pretty low key week a head of us which is a good thing. Lynlee took a 3 hour nap today and is still running on full steam so bed time isn't going to come as early as I would like tonight.
But that's okay.