Preparing for Wills 14th surgery.....

I never thought my 3 1/2 year old boy would be having surgery 14 times! My heart aches thinking about it. But these have been necessary and they have made him who he is today! You might think its something you get use to after you have your 10th, 11th, 12th or 13th surgery! I am here to tell you that it's not easy! It is ACTUALLY HARDER! This surgery may be minor compared to some of his previous surgeries, but I have a feeling of uneasiness. I am SCARED! I can't sleep well! I just want Will to be done with surgeries! As I reflect on his last 3 years, my heart is happy, sad, and grateful! I'm happy this miracle boy survived coming into this world with great difficulty. I am sad for all he has had to endure. I am grateful for the profound care he has been blessed with! Will makes us realize that life is so precious and to not take anything for granted. As we prepare for surgery on Monday the 12th of August, I ask that you please keep this sweet boy in your prayers as well as my family! We need them now more than ever! I pray that the Doctors will be able to find the reasoning of difficulty in capping his trach. I pray that it is a minor complication! I pray that he will have no issues with anesthesia. Some of the things we Love about him are: *We Love that he has to give Brynn a kiss every night at bed! ( he only will stick his cheek out for us to kiss him, but he gives Brynn a nice big smooch) *We Love that BIG SMILE and those precious giggles! (Especially when he gets tickled and then he will sign more when you are finished) *We Love his humor! *We Love that he will come and find you to give you the remote to the t.V. Because he wants to watch Mickey Mouse! *we love that his daddy is his BEST friend! * we Love his determination! *We love that he is the BEST helper with Brynn (helps push her wheelchair, helps change her diaper, and loves to have story time with her) LOVE YOU WILLIAM!

Life is sweet! Life is precious!

Life is sweet! I am so grateful to hold my sweet babies still in my arms! I cherish those memories EVERY day! I tell my littles I love them everyday and long to hear them say it back. Having 2 non-verbal kids is just tough! But you know what? They do tell me they Love me. Brynn tells me with her eyes and sometimes she will sneak in a kiss on my cheek. Those kisses I will cherish forever. Will is just my favorite boy who gives the best hugs and kisses all around! Tonight as I gave my sweet littles their bathes, I found myself observing my kids more than I normally do. Brynn was so calm and still. Just enjoying the warm water gently moving around her in the tub. She was just looking at me with her big, beautiful eyes and telling me she is so relaxed and that was just what she needed. Will LOVES to play in the bath and he is totally all BOY! He Likes to make a mess and splash. Which I am grateful that he is able to splash the bath water. But with having a trach, we have to be super careful not to get any water near his neck. Not the easiest thing to do with a 3 year old. He picked up a cup and was pouring water out of it. He LOVED it and his giggles were priceless. These are the moments I hold near and dear to my heart. Life is so precious! This last week we lost 4 girls with Rett syndrome. My heart literally aches when I hear of another Rett syndrome death. Let alone 4 in one week. It makes you helpless. It makes you angry. And it makes you realize how precious life really is! I CHERISH each and everyday with my kids and make the best of it. Even when we have down days. We always try to make a positive. We never know how long we have on the face of the earth. We know we will have eternity in Heaven. That I am grateful for. But I do know that I will never be ready to face what these 4 families have faced in the past week. I am SCARED and I don't want Rett to take my Brynn! We need a cure and we needed it yesterday! So as I call it a night and reflect on all of my precious memories of my family (even though I was sick as a dog), I will try to stay strong for them. Even though I am one scared momma! So here's to tomorrow's memories!!