Arg, I feel like I need an uplifting post after the last one. I appreciate you guys bearing with me in the times when I may seem a bit on the dramatic side.
Presley has had a good two days. The eye crossing has diminished considerably, so, I am guessing that it is about withdrawls or perhaps her adjusting.
I feel much better about her oxygenation, as the pulmnologist that I had requested come by and assess her, said she looks incredible! He said he studied her chart and when he read all she has been through, he didn't feel like she matched what he had read. He said he is amazed by how well she is doing and how well she looked. I really liked him and he was very funny, when I told him I was an R.T. he laughed and said, 'Oh Lord, that's why you want her off the O2 so badly, just get over yourself, give her the little bit she needs and quit obsessing about it, it will only be for a little while!' Isn't that funny? I love how candid he was and he made me feel much better.
So, on another note, this morning, as I am once again rushing out the door to get to the hospital, I back my suburban into Mike's car! Afterwards, I go into the house and ask for him to come outside. He hates it when I do this, yeah, this is the THIRD time I have done it!!
Mike tends to be of the mind set, that if I am going to crash into another car, I should crash into someone else's car, rather than screw up both of ours...LOL!
Anyhoo, after he comes out and looks at it, sees that I am upset, he just gives me a big bear hug, yup, a hug!
THEN, it gets even better, then he says, 'it is just a stupid car'. Yeah, can you believe it? A man, my man at that, said 'it is just a stupid car.'
Imagine that... I guess Presley is helping all of us put things into their true perspective?!?!
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...
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2 comments:
Hi Kele! I just got all caught up on Presley. Thanks for the updates. All I can really say is that you continue to amaze me. I always knew you were special, but man ... I had NO idea how special. My heart ached for you when I read your post from the other day. I wish I could have reached out and given you that big hug you needed. I'm very glad that it sounds like you are doing much better. I think about you and your family ALL the time. We are praying that your little butterfly comes home VERY soon!
Love, Nik
5 comments:
Heather said...
A new day comes and with it,brand new eyes with which to see it!It's the roller coaster girl.Never liked 'em,never will!A great guy makes all the difference too.That and a really great God that loves us even and most especially on our very worst days!
August 31, 2008 4:05 PM
Shannon @ Gabi's World said...
So glad she's improving more. I agree about the O2 thing. Not that you need to get over yourself, but I just think 0.1 L is something she can battle later when her body is more recovered.
So sweet about your hubby hugging you!
August 31, 2008 8:29 PM
Cheri said...
I am so glad you are feeling better today and that Presley is too! You have gone through so much, I wouldn't expect anything else than pure frustration with having to take a step back. But, Presley has come so far. I am glad you got the affirmation and yes... even the hand slapping from the funny pulmnologist. :) And as for backing the suburban up into your husband's car...well, you can tell him how lucky he is that you didn't have the towing hitch engaged with the little metal ball thing at the end to, gulp, pop a perfect circle into the side of his car....umm, story for another time !! :) Glad he gave you a hug and sent you on your way!
August 31, 2008 11:59 PM
Jeanette said...
What a difference a day makes. As for the car. I laughed so hard I cried. I did the same thing, but to my brother in law's car. I still have the "battle scars" on the bumper to prove it. What a great perspective moment for you though.
September 1, 2008 12:20 AM
Cleo said...
Hi Kele, I found you when reading comments @ the Gifts website. Trusting God and taking one day at a time helps me a lot when going through difficult times. Presley is a beautiful baby and her strong spirit will help her recover soon. When it comes to emotions "Be grateful for whoever comes, because each has been sent as a guide from beyond"
Many Blessings ~
September 1, 2008 11:07 AM
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