Presley's story...
Hello, my name is Presley & I was born February 19th,2008. My mommy was having a difficult pregnancy due to increased amniotic fluid so at 28 weeks she went to see a specialist who told her I had something called duodenal atresia. Due to this intestinal problem it was certain that I would have to have surgery after birth. The specialist also said this condition indicated that there was a possibility that I could have Down syndrome & that mommy should have a test to be sure, which she did. One week later mommy started contracting & bleeding and went to the hospital. That morning mommy's doctor confirmed that I did have Down syndrome. This scared & saddened my parents. Later that evening I was born, washing away much of the sadness. The next day they looked at my heart & said I had a heart conditon, common to Down syndrome babies & that I would require yet another surgery to correct this. Mommy & Daddy got sad again. Since then, the 1st 6 and a half months of my life were spent in the hospital, along with three surgeries, a ton of prayers, alot of tears, plenty of smiles & more blessings than my parents could of ever imagined. You see, at first all anyone could see were the diagnosis & all the fears that they entailed. BUT NOW!?! Now they see me! And well, I don't wanta brag or nothin' but it is kinda hard to think of bad stuff when you look at me!!
Mommy's story...
Hello, my name is Kele & I am the proud mother of this little butterfly. Presley told the story pretty accurately. However, I choose to share some of the more personal emotions & thoughts in regards to this journey the Lord has felt to put me on. When we initially received the news of Presley having Down syndrome, I truly felt as if my life, as I had known it, 'perfect' & uncomplicated, was over. I mourned the loss of this 'perfect' life for weeks. This whole idea of having a 'special needs' child threw me into the darkest & saddest place I have ever been. I would wake in the middle of the night only to realize it wasn't a bad dream...it was my reality. I have never cried more tears in my life. To be brutally honest, there were many times that it wasn't even about my sweet Presley & her well being at all, it was just about the fact that this messed up MY idea of MY life!! You see, my life was supposed to look like that Estee Lauder ad, where this beautiful, perfect family all lay on the beach in matching wool sweaters. Have you ever seen that ad? LOL! I mean, it was all pretty wonderful so far. I was lucky enough to be a stay home mom, 2 adorable, healthy children, married to a hottie, great family, good friends, nice home...seriously, all I needed were the wool sweaters. In some of my darkest times I would go online. I wouldn't necessarily search for medical things regarding Ds but more personal things. I stumbled in to the world of 'blogs'. Looking into the lives of families that also had children with 'special needs' & I found myself saying "wait a minute, this family is adorable" & "Wow! what a cool family". Every night, for several hours, I would do this - visit these family blogs, I was truly addicted. It was then that I realized that so many of these families were amazing, beautiful, 'perfect' families and most times, not in spite of their 'special needs' child, but often times because of that child. The stories on their blogs were touching & profound, the siblings were usually wonderful & amazing. Then I realized...maybe this 'perfect' life I have dreamed about doesn't have a damn thing to do with those wool sweaters...I mean, I live in Texas for God's sake!! Maybe it has everything to do with this little girl...this new little butterfly who has fluttered her way into our hearts. She has already taught me so much since the day the clouds parted for her arrival into our lives. I have no doubt the best is yet to come & that is why I created these two blogs, PresleyandT21.blogspot.com to chronicle Presley's journey. And as for our family blog? Well, where as I certainly invite you to join the fun & would feel honored if it inspires someone in need, as I was, it is truly a site created for me. In case there is ever a night in which I am doubting that my life is any thing less than amazing, incredible, full and yes....'perfect', I won't have far to go... Gilesfamilyof5.blogspot.com
WELCOME ALL...
Monday, August 18, 2008
Presley's in surgery...
Our sweet baby was rolled away from us this morning at 8:15, down a hallway and through double doors awaits her new lease on life, and a ticket home. The time of her surgery changed on us late in the day yesterday. Please keep her in your prayers and we will keep you updated.
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17 comments:
My son Joseph went through a complete AVSD August 9, 2003 (at 15 weeks old). I have written about it for NPR's "This I Believe." If you're interested you can read the essay at my blog: http://emmajoseph.blogspot.com
I still remember the surgery vividly and although I don't know exactly what you and your family are going through, I am sending my best wishes to you during this difficult time.
Just checking...I'm praying.
I didn´t read Presley´s story yet because I just arrived here.
But I wanted to tell you, that I pray for her, and for you.
Our little son Béla had his heart surgery done on August 9(like Joseph:)2007. He was 8 weeks old and needed 9 days after surgery to learn how to breathe by himself and come back to us.
And he did! Today he is a very happy little one-year-old, his heart is good.
This is, what I pray for: That in a few months you may look back at this day with thankfulness, because it was your little angel´s second birthday.
Thinking of you,
iko
Hi, Kele. I woke up at 7:30 this morning and said my prayer - again. And, now, again. I'll be praying all day - I promise. I'm praying for God to be with all of you today, but especially to hold little Presley's heart in his hands & protect it while these amazing doctors do their thing to make her all better.
Also, I wanted to let you know that I just got off the phone with mom. She didn't know the surgery was moved up. I didn't get the text, but Kim did and she also called to tell them. We're all with you right now. Lots of love and big, huge, enormous bear hugs & kisses. Tell Mike also.
Just checking in to see how she is. I'll be praying!
Hi Kele. Presley is absolutely adorable. I love the bow in her hair. My daughter had a complate A/V canal repair at 6 months. She's now a healthy 5 year old with a fading scar as her only memory. I sincerely hope you have the same outcome. Good luck today.
Julia
http://thevancegirls.blogspot.com/search/label/open%20heart%20surgery
Praying like crazy here!I am making a link over to Presley's medical blog for all those wanting an update.Feel my arms around you Kele,I'm there right with you.Most importantly,He is right there with you!
Thinking and praying for you ALL this morning and especially for a speedy recovery for Ms. Presley.
Love, The Jorski's
Saying prayers for your beautiful baby girl. Prayers of strength and comfort for you all, Kitty in Vermont.
Thinking and praying for you ALL this morning. Especially for Presley and a speedy recovery.
Love, The Jorski Family
Kele, I am praying for you all today and have been. I also took the liberty to add Presley to our church's prayer list - she will be specifically prayed for several times this week.
It is o.k. that you are not feeling you faith right now. This is a time for others to stand in the gap for you. When the man with the demon possessed son came to Jesus and Jesus asked him if he believed, the man replied yes, but help me with my unbelief. Jesus didn't punish the man's emotionally induced lack of faith (he was desperate to see his son free - same as you - but knew he SHOULD believe) by withholding the miracle. Jesus gave the man his miracle and set the child free.
We're standing in the gap for you and for your precious baby. We're believing for a complete healing and restoration of Presley's health!
I can't imagine what it's like to have your baby wheeled away for OHS, all those emotions...praying for you all this morning.
praying and will be checking in to check on sweet presley!
Praying for baby Presley and peace for Mom and Dad!! I very clearly remember sitting in the waiting room waiting for news during our son's heart surgery a year ago...knowing that others were praying was so comforting to us. Your daughter has touched so many lives already...we have fallen in love with her over your blog.
Cheri, Toby, Luke, and Reid in California
http://raisingreid.blogspot.com
I dropped in from Gabi's World. Little Presley is so beautiful and I just love her hair. I'll be praying for her and your family.
Nonnie and Poppie
We are with you in spirit, we know this is tough on you both. Presley is luckly to have special parents and we are lucky to have such a special grandaughter. Keep fighting Pres, we're waiting for you.
Kele--I literally didn't sleep a wink last night. I don't know how you and Mike do this!!! I said this in the text but want to put it here because I know you and mike are reading comments and you shouldn't forget this......hundreds, literally hundreds, if not more, are praying for Presley and her doctors today and those prayers will be answered. I can't wait until we look back on this day as the wonderful, most beautiful day if will turn out to be!
Love you,
Kim
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