Ava had a good and VERY LONG visit at the cardiologist late yesterday. Everything seems to be fine. she does have a 2mm VSD, which is not a big deal and should close on it's own. Not surprising since she is a preemie. Again we find out that Ava is either a hearing impaired poky 35 weeker or she may have a mitochondrial disease. All the specialists are saying she looks great, BUT if it weren't for her brother.... So we wait. Today we go with that she is a poky 35 weeker who is starting to get it together. She is visibly bigger and I like that. Now we wait for all of the test results to come back and a resoultion to acess and test Eric's DNA.
I find that I am being taught many lessons in finding hope even when I feel despair. When I find some hope I hang on tight to get me through the next period of time. It could be an hour, a moment, a day. When thoughts and feelings of despair trap me I pray for God to give me some hope. Despair is dark and ugly and not of the Lord. I am constantly reminded of how human I really am.
I've been trying to steal moments with the other girls so as to not be totally focused on Ava. Last night while Allan was tucking Emily and Alexa in I was "Snuggling. 2 minutes." with Elaina. While were were laying on the floor we read Pooh's Heffalump story. Elaina was insistent that there were no Heffalumps in the book, they were Elephants. There was just no way to convince her otherwise. Then her 2 year old attention span travelled from there to Ava's ears are broken to the notion that Jesus loves her and her sisters and if Jesus lives in her heart He will tickle her. But then again those are just not Heffalumps. Sweet moments like those are ones Mommy's treasure. Especially now they are like breaths of fresh air.
As difficult this is God has blessed us with 5 unique and beautiful children. All of whom we learn valuable lessons from whether they are with us for 4 months, like precious Eric, or hopefully a lifetime. Or job is to love them for as long as we get to keep them.
About Me
- Amy Benton
- In June 2001 I married my best friend, Allan. We have had five children, three of whom are living. Emily and Alexa are twins who turned 5 in Nov. Elaina will be 3 in March. Our baby Ava was born August 13, 2009 and died on Dec. 18, 2009. Our son, Eric, also died when he was 4 months old. He would have been 6 in Aug '09. They both had the same very rare Mitochondrial disease. A Fund has been established to assist with Ava's medical bills. If you feel lead to help us in that way Checks may be made out to "Ava Benton Medical Fund" and sent to: Linda S. Dilorio Wilmington Trust Company 151 Lantana Drive Hockessin, DE 19707.
Your five children have all been blessed with two wonderful parents! Amy, your strength always amazes me. Your such a blessing and encouragement to many of us. P.S. For the record I call first dibs on Ava tomorrow afternoon. My moose will be with Mike so I can hold her! =)
ReplyDeleteYour Friend,
Joy
Don't you love when the little ones give you a glimpse into how their minds work? I love the notion of Jesus tickling her heart.
ReplyDeleteHi Amy,
ReplyDeleteI am praying for your family and your precious Ava. She has our love, thoughts and prayers, as do all of the Benton's! Yes- Even the Benton that went curbside at the wrong Appleby's :)
I only had the opportunity to work with Allan for such a short time, but know that you and the children light up his heart with so much joy. You are amazing parents, and your kiddo's are so blessed.
Your in my thoughts and prayers, and you inspire us so much!
Amy--the blog looks amazing. Still praying for you guys and ava fervently! I love her!
ReplyDeleteYou are a natural at this blogging thing! Thanks for the update - praying for access to DNA and hope, lots and lots of hope!
ReplyDelete