Happy Birthday to Brystals daddy! I should probably be asleep, but my mind is racing tonight. I feel like it has been too long since I have posted so I thought that I would post an update while I have all these built up emotions! I need to vent!
If you follow us on Brystal's facebook page you know how crappy her last few weeks have been. It is so hard for me to watch her go through all this pain. I am so emotionally drained lately. I think I do a pretty darn good job at holding back my emotions to everyone and putting up a poker face. I don't know. Just tonight after our bandage change a lot has been on my mind. Also, a family member is at the hospital getting ready to bring a baby boy into this world and it is a bitter sweet moment for myself. Brystal will be one on Saturday ( yay!) and I am sitting her remembering every second of the day I went into labor and every feeling I felt when she was born.
When you find out you are pregnant it is supposed to be the BEST thing ever. And it was with Brystal. We were going to have the perfect everything. We had everything setup and ready for her to arrive. And when that moment came, nothing and I mean nothing went the way we planned. The first thing they said when she was born wasn't anything you would EVER expect to hear... "What's wrong with her leg? Do you see that?" As a mom I didn't even know what to think. I just remember looking at Brendan like uh? What? Is this real? I remember asking him "what's wrong?!" Then they handed me her and I fell in love and thought "OMG she has hair!!!" We didn't think she would have any! But she did. And then they took her away. Scariest most terrifying 4 days of my life.I will always remember the ride in the ambulance. The first time I heard Epidermolysis Bullosa. The images we saw online.. I can't believe it will be a year on Saturday. A year of Brystal <3 A year of watching my family grow! A year of EB....
I am so thankful for what this is teaching me and what I continue to learn. Not a day goes by that I don't wonder why Brystal has to endure such a horrible painful life. Not a day goes by that I wish they would find a cure already. So many babies are being born recently with EB. It is heart breaking. I hate knowing that every single one of them is going through what we went through. I do not wish that upon anyone. So many people take things for granted and don't appreciate what they have. No one expects to have an unhealthy newborn. It just isn't something you see in movies or hear about until it happens to you or someone close to you.
Saturday we are having a party for Brystal. I am so excited. I am also sad. Where has this year gone. I think having so much to deal with makes the time fly by! I can't believe I haven't worked in over 6 months. Sophie and Emily are so excited to eat cake for Brystals birthday. It is so cute to see how much they love their littlest sister. The girls are such great big sisters for Brystal. And Brystal LOVES them. She can't get enough of them.
So in October we had an awareness event and the hospital tried to raise money for the EB Clinic ( Not sure how that part went) But we were asked to give a speech... I was beyond thrilled. I got up there and 3 sentences in started bawling my eyes out! Luckily Brendan was there to save me! I was so mad at myself. I really really wanted to tell Brystals story and talk about how AMAZING everyone is at PCH. We were able to get pictures with a lot of people. We even got a group photo with Brystals entire derm team! I am waiting to get a copy sent to me. I will definitely post it as soon as I get it. Dr. Price is the best doctor ever! And Nurse Kellie is just plain amazing. I love everyone there. We couldn't ask for a better team.
Ah I have so much more to say but I don't want to drag on and on and bore you to death! But I promise to write a whole post about Brystals birthday! Stay tuned!
OH! I just wanted to say thank you to everyone who donated to our fundraiser! You guys blow me away! You guys raised over $4000! That meant the world to us. It really helped us a lot. We got a few things paid off with that money. It was much appreciated. It was a start for us to get back onto our feet! We love you all!
This is what her leg looks like today 11/8/12
This was her tongue last month :(
We celebrated her birthday tonight even though it was daddy's birthday :)
<3
We had a cyst removed on her leg last week. This is the cut they made.
:)
They are amazing together! <3 these girls!!
Naked baby!
Happy Halloween!!!!!!!!! <3
