Monday, February 13, 2012

First post!!

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 :)


Love always,
Brayce, Brendan, Sophia, Emily and Brystal

8 comments:

  1. Brayce, please don't make me cry. I have had the pleasure of knowing you and meeting and playing with Bristol. Such a sweet spirit, i will always have a prayer for her in my heart.

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  2. hey bryce, she is absolutly beautiful :) My daughter was born 11-9-2011 she is EB free. just wanted to leave a comment about the wrapping thing.. I have EB simplex (not sure of the subtype) but as a kid, my skin seemed to do better when it could breathe there were times however when leaving my skin unwrapped was not an option and it always seemed to me that my skin was so much worse than when originally wrapping afterward. I know with my skin certain repetitive actions my skin seemed to 'get used to' so to speak... and wouldnt blister as often - for example riding a bike, my bottom and hands blistered so bad when i got my first bike - instead of wrapping when i was done we just made sure we lanced all new blisters and soaked in a warm bath or took a swim in the pool - after about 2 weeks id still get blisters but it was nothing like the initial blistering when i started learning to ride my bike. obviously brystal is only 3 months old and she has a different form of EB.. but just wanted to share some of my experiences. :)

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  3. Praying for you and sweet Bristol. Much love on Valentine's day.

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  4. What a beautiful child. May God bless you on your journey. Remember you're never alone.
    Good luck with your blog! Love to your entire family.

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  5. My daughter (Amber) has been keeping me updated on Brystal. You and your family are in my prayers. Your daughter is beautiful and lucky to have such a caring mommy.

    Dawn

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  6. What a beautiful baby girl!!! The day I 'met' Tripp (via Courtney's blog), I made a promise that I will never stop fighting for these sweet babies. Please hold tight to your faith and enjoy every moment with your beautiful daughter.

    Sending up prayers for you all-
    Mary

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  7. Brystal is absolutely gorgeous! I admire her and you both for your strength and bravery in battling EB every day. Thank you for choosing to share your story publicly through your blog. Sweet baby Brystal is going to touch a lot of hearts, I know it!

    God bless,
    Kristina
    EBawareness.com

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  8. What a beautiful young lady!
    Sending you a big hug from Spain!

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