Nashville here we come......

Well we got an official date for the cath and surgery, November 16th for cath then the 17th for the glenn operation. I am getting so nervous, but in some weird way I am excited. I am just ready to go and let Raef get on with life. I am tired of setbacks. I am feeling pretty good about his recovery process, he hasn't had any heart issues since the shunt, only stomach issues. I won't count my chickens before they hatch though. He is doing so well lately he smiles all the time and has laughed out loud a few times, it just melts my heart! He is eating cereal a lot better now tonight was the first night he actually saw the spoon and opened his mouth for it. Sunday is the heart walk I can't wait! Laurie (Scott's Sister) is coming in from Florida tomorrow for the walk and to see Raef before surgery. And Olivia too. Its amazing we see Laurie about every 6 months at the least and when she is here everyone else is scum on the floor according to Olivia. She loves her aunt Laurie. I do too, couldn't ask for a better sister-in-law, now if only we could talk her in to moving back home! Olivia is still loving school, and is so excited for Halloween. She is going to be a Clemson cheerleader, and Raef is going to be a football :) That's all I have for now!

It's coming SOON!!!

We went to the cardiologist yesterday. While we were there they did an echo that they had planed to send to Vandy to look at and decided on a date. We originally thought the first or second week of November. Once they looked the doctor said the bottom of the shunt was starting to narrow...which is expected about this age. So it looks like surgery is going to be sometime this month. So in like three weeks we are gonna be in Nashville again!! This is just so bittersweet. On one hand I am so ready to go get this over with, but on the other I just want to keep him in my arms forever and never let him go! The surgery is inevitable so I guess let's just go get it over with and get back to 'normal' life!

Woman in the Mirror

I saw an unfamiliar face in the mirror today. She caught my eye as I rushed to start the day. I hardly recognized this woman. What had changed in her eyes? She was no longer young, naive, and seeing the world through rose colored glasses. What has caused the worry lines and thought brow? How could she look so fragile and weary, yet so determined and strong? Around some corner on the road of life.....she had been shaken to the core of her very being.

There was a time when only tears and fears were reflected in those eyes. A doctor's unexpected words, the future suddenly so uncertain....gray, shadowy images of the scary concept of her child coming into the world as "disabled". An incredible journey began that caught her by surprise and would take her places she never thought she would go. The journey had been long at times and she had shed tears of pain and tears of joy. She had hopes and dreams dashed in the blink of an eye. She had questioned WHY? She had friends fail her and not know what to say or how to help. She'd seen her child suffer. She'd cried silent tears into her pillow at night. Tears of exhaustion and fear. Tears of helplessness and longing. Tears of thankfulness and relief. Tears that are choked back during the day, but are unleashed like flood waters into the safety of the night to wash away any walls being built up to protect her heart. Nights of worry into endless days of responsibility. Then slowly but surely her broken heart begins to heal.

The same pity she had once felt as she watched a mother hold her "special child" close was now looking back at her in the eyes of strangers. But a smile tugs at her lips as she realizes she now knew the secret. The hard fought, carefully guarded secret, that was slowly reviled in the depths of her heart....but only after the tears and anguish of the first few days and weeks of this new life. The illusive truth that mothers of special children discover as they take their first faltering steps down this new path....it was ok. She and her child could survive... even thrive. It was not a grueling and unforgiving road as she had imagined. The fog, confusion, despair, and fear were being slowly replaced by peace, acceptance, continent, joy, and gratitude. A mother's unique unconditional love changes the equation that may look hopeless and tough from those outside. looking in. She will fight for, live for, and die for her child. These special children transform those around them into different people. Stronger people dare I say it.. deeper people. Long gone are the days where they had to worry about where to vacation and what color mini-van to buy. They now struggle with life and death medical issues. They must answers their child's question about life's unfairness and pain. What remaining strength and energy they have is spent making their "family life" as normal and happy as possible.

A twinkle returns to the woman in the mirrors eyes and she takes a deep breath and remembers what she has been fighting for. How worthwhile this journey has been. This child is an incredible gift and what a privilege it is to be given this task of raising him. Her child is beautiful and perfect in her eyes. She longs for her child to be seen by the world with this filter of love, acceptance, and potential. Could others take the time to see past this little boys slower steps to see the life and love reflected in his eyes? Would her child be able to see himself through the filter of contentment that the woman has journeyed so long to discover?


Hope was rekindled as the woman's eyes grew brighter. The future remained uncertain, but the incredible protective love she felt for her child threw a warm blanket over the cold dark storm clouds that used to threaten her very soul. As she threw open the doors of her heart, she felt the warm sun on her face and she beheld a beautiful rainbow of intense beauty and unmistakable peace. Hope still comforts this woman in the middle of the night. Love gets her through each day. Faith takes her hand and leads her around each corner and through each deep dark valley. Peace soothes her heart as she relinquishes control of their own destiny to One wiser and all knowing. joy brings laughter and control to those once tired eyes once again. Each day is recognized for the gift it is.

I gave that woman a smile as I left her at the mirror today. I'll see her again soon and I am curious to see how she will change and grow. She's not the same young, carefree woman she used to be, but that's ok. I like who she is becoming and I feel comfortable in her life. The sun is shining, the day is brand new, my child is humming and God is so good!


I found this on someone else's blog and felt like this sums up everything I don't have words for.

Time is moving on!

I know I said I would try harder to update, but I guess I haven't tried hard enough!! A lot has happened over the past couple weeks. All good for the most part! Olivia had a special visitor at our house two weeks ago....the TOOTH FAIRY!! She was so excited, she even let me pull the tooth without a flinch. Apparently the Tooth Fairy is very wealthy she gives 10 dollars for the first the tooth now a days (according to Scott anyway). She is loving kindergarten! I am so blessed to have such an outgoing child that can make new friends anywhere she goes. She started riding the bus home on Monday, she really thinks she is hot stuff! She is only on the thing for maybe 2 minutes :). She thinks it is so cool.....for now anyway!

Raef is doing really well. We went today for his 4 month vaccinations, which is not fun at all. He doesn't do that bad, he actually hates the car seat more than the shots. He had a horrible week last week, he cried all the time was spitting everything up and was very gassy. We took him to a gastrologist on Monday and she raised his dose of Nexium and said keep using Mylicon drops (which I think they should be worth more than gold). It has seemed to help. He is smiling a lot more and yesterday found his arm! Although he is still pretty irritable, I can see the light and the end of the tunnel. We go next week to the cardiologist to have an echo, Dr. Madhok is going to send that one over to Vandy and get there take on it. It is looking like surgery will be the first week of November...NERVOUS!!!

On October 31 the American Heart Association is having a walk at ETSU mini dome. They got in contact with us through our cardiologist and asked if we would be the "spokes family" for children this year! I was so excited!! So many times everyone focuses on adults with heart disease, not children. It will be a great opportunity to spread some awareness.

We are going to have our family pictures on the 25th, I can't wait! I will at some point figure out how to put more pictures on here so I can let everyone see them!

Special Day

I have two exciting things happening today! First, I entered a contest for a free session with Erica Mowell Photography.....and won!!! I am so excited to have family portraits made. She posted on Facebook that she was doing a contest for a free session, just write an e-mail and tell why you think you deserve the session. So I wrote, but I don't really feel like we deserve anything. God put us where we are in our lives because he knew we could handle it, we might not think so at times but he knows so. Since Raef was born he is not very cooperative with the picture taking thing, he is not the happiest baby I have ever been around, but Olivia wasn't either so I know there is an end to it. Several months ago I wasn't sure we would ever have a family picture that included Raef, and I just can't wait to see the pictures of my complete little family!!! Go check out Erica's work she is amazing....ericamowellphotography.com!

Secondly, today is our two year anniversary! Its is so hard to believe it has been two years. I never thought we would be where we are now that's for sure!! With that said, I also could not begin to fathom going through this with any one other than Scott. He is the most awesome man I have ever met, he keeps me sane the majority of the time. He knows that I get a little high strung when I am stressed and is very aware that he is always the one I take it out on. He takes it, maybe not always with a smile on his face, but he never says much back, he just lets me get it out. :) I hate that he is the one that it gets let out on...he is just as stressed as I am. So going into out third year of marriage I am gonna try to change that !; ) (Scotty when you read this, don't always hold me to it!) From the moment Scott came to the video store and I suggested a JaRule movie for him, haha , I knew there was something special about him. We took a bittersweet 2 year detour along the way so that Miss Olivia could make her grand entrance to the world, but I wouldn't change it. That has made us the stronger couple and family that we are today. I would not change one thing about our family, we are so blessed and happy! Bring on 100 more years, I can't wait! I love you Scotty thank you so much for being the man that you are to me and our children!!

Poem from a Friend

I wanted to share this poem that my friend Suha has posted on her blog. I met Suha when I was pregnant with Raef, she was pregnant with her sweet little girl Nadia Miriam. Our social worker from Vandy was giving Scott and I a tour of the hospital and Suha and her husband Tommy were also taking the tour. We didn't talk much through the tour we cried a lot and had no idea we were both going through the exact same thing. Towards the end Suha asked me what was wrong with our baby so instead of saying the medical term for it I just went ahead and gave the explanation because everyone asks what is that? So as I was starting to explain she said Hypoplastic Right Heart?? I was like YES and she told me that her daughter has the exact same thing! I know I shouldn't be excited because of this, but it felt so good to have someone understand you completely. I asked for her phone number and email, I chickened out on calling I just didn't know what to say!! I knew that her baby was also due in May so once we were in the hospital I asked our Social worker if they were there and how they were doing. She told me that she couldn't tell me anything because of hippa, but that she would talk to them and see if it was ok to get us back in touch. Of course it was, and we visited each other a few times in the hospital. We now talk every couple days on the phone or through emails and I have been so blessed to have her to compare notes with! God works in such great ways!! She has become one of my very best friends even though she lives 5 hours away!! Her little girl is doing amazing! It is so awesome how these tiny babies are so tough!! So here is the poem she has on her site I warn you, you will cry!!

It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

I will find the time!!

Well it has been forever since I have posted anything. I am awful at this stuff...ask my friends, I don't even text back half the time. All things are going well right now, we are still off the tube we thought we were gonna have to put it back in, but so far so good. Raef lost about 5ozs when we first took it out but he has gained all of that back now and doing really good with his feeds. I know it is still a possibility it would have to go back in but as long as he is gaining it is out! We went to the cardiologist on Thursday and his heart looks really good the pressure in his lungs is starting to drop so that is good news! Dr. Madhok says surgery will be in November. It's kind of weird I wish we could just go now and do it, but I really never want to go back there again!! I guess we will just wait three more months and let him grow and be a happy baby! He is starting to smile all the time now and loves to be tickled, he makes some cooing noises, but he is really hoarse sounding when he does. When we go back to the doctor I am gonna ask about it, he has had so many things put down his throat it worries me!

So last week was a week I have dreaded for many years! My Olivia started kindergarten!!! It is so hard to believe that she is 5 1/2, She is so smart and so excited about school! She has made a new friend already, Julie. I apparently embarrassed her, I put a note in her lunch box that said 'I love you' and when she got home she asked me not to do it again!!:( I hate that she is so big she thinks she doesn't need me anymore, I wish I could go back to when she was Raef's age. I would have done things so differently, I took advantage of having a healthy baby and didn't soak it all up with her. But she is a fantastic little girl and is such a help to me she keeps me sane a lot of the time, I am so blessed to have her! The way she came to me was such a whirlwind and and I was very young, but in so many ways that princess has saved me. Made me realize how important life is jobs, money,and houses do not mean anything without your family! She is one of the luckiest girls I know. I have been so blessed to find a husband that loves her and takes care of her as his own.
For now that's all I have...hopefully more good news soon!