So I've been wanting to start a blog for awhile and I finally got the chance! I am so excited! So just a recap of what have been going on the last 3 months. Brystal was born 11/10/11 and was diagnosed with rDEB. It has been a pretty bumpy/exhausting/emotional ride.She was also born with Aplasia Cutis (missing skin) on her left leg. She is currently bandaged up on both feet, arms and legs and we have mepilex on her sides to stop the friction. We are in the process of seeing how her hands are doing so we haven't wrapped them in about 2 weeks?
I am not going to lie. There have been nights where I just cry. EB is not fun to deal with and having a baby born with it, is extremely hard. I know there isn't anything I can do to change it so I accept it. I know that there is a reason that I received Brystal and I couldn't image life without her. The EB community has been amazing! I am so thankful for everyone we have met through Facebook. I don't know where I would be without the support of all of them.
So when Tripp Roth passed away they shared this lovely poem at his funeral...
I Still would have chosen you - By Terri Banish
If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have cho...sen you... ... ... If God had told me, "This soul would one day need extra care and needs", I still would have chosen you
If He had told me, "This soul may make your heart bleed", I still would have chosen you
If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you
If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you
If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you
If He had told me, "All that you know to be normal would drastically change", I still would have chosen you
Of course, even though I would have chosen you, I know it was God who chose me for you.
OH! SO tomorrow is Valentines day and they are airing Brystals story on KVOA @ 10pm Arizona time! I can't wait to see how it comes out!
Hope everyone has a great Valentines :)
Brayce, Brendan, Sophia, Emily and Brystal