Ava's mommy here Thank you all for being so patient with me and for your continual loving care and support for my sweet Ava! Part of the reason I had not written a post in so long is because I had been extremely discouraged. One minute Ava would be doing well the next minute she would get a corneal abrasion. One minute she would have the courage to not hold on to the couch and try to walk the next second she would fall and take skin off her fingers. And bandages changes were just another stab at my heart. Anytime I would unwrap her she would just bleed and bleed. She would cry and say "momma stop!! you hurt me." All I could do was try to hold back tears while telling her that I'm so sorry and I never want to hurt her! Explaining to a 2 1/2 year old that a bandage change is good for them no matter how much it hurts is impossible. So in my despair I did the only thing I could, I cried out to God. How much more could Ava possibly take?! She never gets a break! Im tired of the emotional roller coaster. Why can't Ava just have a normal life! I have had to say no to her on so many things that a normal toddler should be experiencing. It just breaks my heart. The questions went on for quite some time. But just like I comfort Ava when she is in so much pain, God was comforting me in the midst of all my fear and confusion. I knew He had heard me. So I am excited to share this miracle! Ava's left eyelid has had an open sore on it for about a year and a half. We had seen the eye doctor numerous times and with each visit the wound was getting bigger and bigger. All they could suggest was putting a lubricating ointment on it. It never worked, so I stopped using it. I promise you that from the day I cried out to God, until now that sore has almost completely closed up! He had heard the secret cries of a broken hearted mommy, and proven Himself to be faithful. Ava started doing better, as you saw from Aunt Monkey's post. I just want to stop and say thank you for your prayers, I know this was God's hand at work!!! Ava's overall demeanor changed. She was just so happy. But sadly bandage changes were still awful. I hated that time of day!! In the beginning of October my sister had invited us to her church for a healing service. The guest speaker prayed for Ava at the end. He asked me if I believed Ava could be healed and I said Yes! The next day I did Ava's bandages and it wasn't as bad as it had been. Day two and three rolled around and she was no longer bleeding after each bandage I took off. I called Tony and told him the amazing news! And with each day that has passed her wounds have been getting smaller and smaller. Bandage changes have gone from the most dreaded part of the day to us eagerly unwrapping her bandages to see more new skin! So many areas are healing. Even the big scabbed spot under her nose is healing! If you are struggling with believing God for something, just hold on! I will keep you in prayer if you need me to, just like you all have done for us. If He can answer my prayers He can most certainly answer yours! Ava's cover page was taken last december when she had that awful virus. Quite honestly i wasn't sure she was even going to make it. I look at her today so full of life! I thank God everyday. Sadly many families have lost their loved ones to EB. Please join with me in spreading awareness! We desperately need a cure! Too many people have suffered for too long. A few months ago Ava and I went to Walmart. As we turned the corner two kids around 8 and 9 years old saw Ava and started pointing and yelling ewww, eww, look! I quickly started talking to Ava and engaging her in conversation because I knew she would know what they meant. I waited to see if their mom would do anything about it. This carried on for about two minutes until the mom just pulled them away. I cant even begin to explain how hurtful that was! Im grateful at that moment Ava didn't even notice. But please, remember to spread awareness to your children as well! Again thank you very much for all the love and support. It would be great to hear how you were able to spread EB awareness! -Rose
Coming to the end of self
This is what EB is teaching Rose and can teach us too.
In every situation that we find ourselves in we can learn valuable lessons if we allow ourselves to bend and mold to the Teacher's way. Nobody wants to suffer. Nobody wants to see their child suffer. It seems, though, we don't learn unless we suffer and go through things we dread. God has promised in Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." The rough situations we find ourselves in are not meant to harm us but to draw us closer into Father's heart.
I encourage you to seek God and ask Him to help you. He will, you know, because He loves you.
Isaiah 41:10 ESVFear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand.
Praising God for this miracle in Ava!