Reflecting: A Week After Surgery

I like to help others.

I want to make a difference in the lives that I come across.

I would like to be part of a significant change.

I wish that I could reform the world or at the very least, make it a better place for my children.

I know, I know... how very pageant queen wanna be of me.

The truth is that I just want to be remembered for something other than my name and face.

I hope that when my time comes to be with the Lord that my children will be able to honestly say that I was a good mother to them, that my husband can say wholeheartedly that I was a good wife and my friends will be able to say that I was a good friend. I hope that there will be memorable stories about me, ones that are positive and ones that have worth.

It makes feel good when I have done something that makes my family proud of me. It makes me feel good when I have helped another person or changed a negative thing into a positive one. I like when people come to me for advice and when my opinion is valued. It makes me feel like I am doing something right in that particular area.

This last Monday, when Vada and I went back to Peoria, I ran into Gale. Gale was the lady/nurse that gave Justin and I our tour of the Cardiac ICU and talked to us about what to expect with the surgery, recovery and the hospital stay in general.

I was signing papers when I saw Gale come onto the floor with another lady. I could tell that she was giving this women a tour as well. The lady looked terrified. I wondered if I too looked the same during our tour. I'm sure that I did because I was frightened in a way that I had never been before.

Gale introduced us, but for the life of me I cant remember this ladys name. I am terrible with names and I feel awful that forgetfulness is a trait of mine. (She was from Champagne and her daughter was only a couple of months old.) Anyway, I said hello, did some small talk, showed her Vada's chest and told her everything would be okay. Her voice was small, quiet and shaky. I wanted to hug this stranger but didn't. We said our good byes, I wished her all of the luck that I could and we went our separate ways.

Later in the day I was going back down stairs in the hospital when I saw this women again. This time she was sitting with her baby (she didn't have her when I had first met her), and an older women. I smiled at her and almost walked away but didn't. I felt a pull and I asked her if I could come see her baby. Her daughter, whose name I also forgot, is beautiful! A sweet blonde with crystal blue eyes. Ones that were illuminated with the special specks that may only come with that extra chromosome that our Vada also has. She was precious. I said a quick prayer in my head the moment that I looked at her sweet baby doll face.

It was on Monday when we met. This little ones surgery was the next morning. The same as Vada's, only one week later. Soon, they would be where we were at and then they too would be coming home. I prayed for that to be their story.

The mother and the grandmother both had all kinds of questions to ask me. Questions about the surgery, questions about Vada's health, her milestones and our experiences thus far. There was a sadness in the mothers voice and in her eyes and I couldn't tell if it came merely from the fear of the up coming surgery or if it were more than that. If I were to guess I would guess that she was unaware that her daughter had Down syndrome until her birth. I couldn't imagine having things happen that way. I'm glad that I knew before hand.

It felt good to answer the questions for them. I remember when I was pregnant. I searched for answers and I wished that I had had someone whom I could personally talk to and physically see, not just people online, who had experience with Down syndrome and the different health issues that we were going to be facing. Even with Vada's heart surgery, I searched. I had a lot of support but it would have been nice to have a friend who knew what I was going through and to have them here in person to talk to.

Tonight, two weeks ago we were expecting to be released in the morning. I have prayed every day that this mother and her family are expecting the same thing. I hope that their daughter is doing well and recovering wonderfully. I hope that in some small way that I was able to make a difference and maybe that I even helped alleviate some amount of fear or stress for them.

Yesterday, I called the hospital and I left a message for Gale. I told her that I wanted her to give my information out to anyone that she thought I could help. I dont know how I could help, other than being here to listen to someone, telling them what I know and what I have experienced in our journey so far, but I would like to try.

I realize that I am a minor in a major league when it come to experience with Down syndrome. I realize that Vada is barely fourteen months old and before my pregnancy, I knew nothing about Down syndrome. Others have years of parenting and sibling experience with Down syndrome but I still want to help. I just want all parents to think that their child is amazing, even if they happen to have Down syndrome. It doesn't have to be a sad thing. You don't have to morn over it. It can be celebrated and embraced!

Tonight, I pray again for this mother and her daughter as well as the dad and the family. I pray that they will be coming home soon and that the sweet baby girl grows up healthy and strong and I pray that I helped them and maybe, just maybe that I can help others.

Special Deliveries and Prayers for Friends

Today Vada and I received a very special package in the mail. It came from our friend Annie at The House That Jade Built. Annie sent Vada a homemade personalized heart warrior blanket. I'll admit... I love, love, love receiving packages in the mail! Especially, when they end up being this cool. Thanks Annie for thinking of us!

Annie and I met cyberly (Is that a word?) several months back, when she was pregnant. We have yet to meet in person but its in the works for once our girls have fully recovered.

Since Ollie's birth Annie has become a stay at home mom to her three children. On top of taking care of her kiddo's Annie also has an Etsy business that she runs from her home. You can check Annie's Etsy store out here, when it's up and running again. Right now, as she awaits Ollie's heart surgery, she has decided to take a short break.

I'm not writing this to sell Annie's items, but she did send some of her products to us. Plus, she opened up her Etsy store to help make a little extra money so that being a stay at home mom would be an easier thing to do. Sometimes choosing to be a stay at home mom means giving up a lot, but in my opinion, it's all worth it and there is no better job out there than taking care of your children. With that in mind I feel as another stay at home mom that I have to tell you about the cool stuff that Annie makes and sells.

Along with the personalized heart blanket Annie sent this beautiful stamped necklace. I hadn't realized that it was in the bag when I opened it. I was so excited to receive the blanket and Ollie's prayer card that I didn't check for anything else. I was getting ready to recycle the bag when I happened to see the tiny box that the necklace was in. What a sweet surprise!

The necklace says "precious in His sight". I thought it was only appropriate to put it on Vada... and then take it right off, because she is only fourteen months and it went straight to her mouth! Duh, Mom! Its beautiful and I plan on wearing it until V gets a little older, then i'll give it to her. This necklace, along with the blanket are two examples of what Annie makes and sells in her Etsy store. Again, when she reopens it, you'll have to check it out! Thanks again Annie for thinking of Vada when you made this fantastic blanket and thank you for the necklace... it is precious!

Now that Vada and I have shown off the cool stuff that Annie sent to us Vada wants to show you her friend Ollie (See how she points to that pretty little girl in the picture?). Ollie was born with a similar heart condition that Vada had, only Ollie's condition will need to be corrected much sooner in her little life then Vada's needed to be.

Having gone through this surgery and knowing how many people prayed for her. Vada wants to ask that each one of you who read this to say a pray for Ollie. You don't have to know Ollie to pray for her or to pray for her family. The power of prayer is amazing and God loves when we talk to Him!

Ollie's heart surgery is scheduled for June 9th, 2011.

I prayed for the same thing with Vada that I now pray for Ollie and her family. I pray that the nurses and doctors have a realization that Ollie is not a number. Ollie is a child, a grand child, a sister and a friend. She has worth and value that is unmeasurable and she has a family who loves her dearly. I Pray for her family to have a calmness wash over then in their time of wait. I pray that they all will be strong in their faith and in the knowledge that God is with them, always. Finally, I Pray for a quick recovery and that Ollie's repaired heart helps her blossom into the strong little girl that she has already proven herself to be, but after the surgery, that she has nothing holding her back.

Small Fish in a Big Pond

Jasmine and the rest of this years fifth graders have lost their chance to be the "big fish" or the "top dogs" in their schools. (Do those phrases out date me? I feel as if they do.) Anyway, this was the last year for our area Elementary schools to have the sixth graders, this coming fall the sixth graders will now be part of the Jr. Highers. The lost "Rights of Passage" didn't phase Jasmine, in fact she is more than willing to give that right up just to become an official member of the Jr. High School Clan.

Today was her awards ceremony, as I sat listening to all of the things that were being said from the principle I couldnt help but get lost in my memories of her younger days.

This girl of mine. My eldest. My first. She drives me crazy at times. She can bring me to tears quicker than most others can. She has a attitude that comes out and bits me in my butt as well as her own and she is beginning to act as if she needs me less and less, which is sad but also a part of adolescents-I guess.

This girl, my daughter, she can also warm my heart with her voice and a few choice words that she speaks. She impresses me daily and has amazing capabilities.

This girl, Jasmine, I love and cherish her, beyond any words that I could ever speak, let alone write. I wouldn't trade her for anything or anyone else in this world and I am grateful for the gift of being her mother.

Sound Asleep

Vada may look a little tired but don't let her looks deceive you. She's recovering and she is most definitely gaining strength each and every day that passes.

This morning she woke up early and ready to play. I however, was not...ready to play or fully awake.

I am so, so, so tired. I didn't sleep well at the hospital and prior to that I hadn't had a full nights sleep in ten months. No joke or exaggeration, it's been that long! Now, it's like I cant catch up. Someday. Someday she will sleep through the night and then, so will I.

Anyway, that's all besides the point.

This morning Vada ate real food! I give her all kinds of different foods to try. I know some of the things that she prefers to chew on and I throw them into the mix but I don't let them become all that she experiences. Today, I made her something new. I made Malt O Meal, the chocolate kind. I left out the added sugar and salt and otherwise made it as directed, nothing added, nothing special. She took about ten bites... and swallowed! I couldn't believe it. The texture is so odd, I would have never imagined that she would like it, but I was wrong, she did!

Then, tonight, before dinner, she was so tired and kept nodding off. It was so sweet, but I knew that I had to keep her up a little while longer. Otherwise, I would be up all night with a little one who would think it was time to play. I quickly heated up some left overs from last nights dinner. It was rice with broccoli and cheese. She liked that too! She took several bites, packed quite a lot of it in her cheeks but I would be willing to bet that at least half of what she took, she swallowed. This is huge! I could tell she was finished when she spit out everything that was in her mouth out. That too is a good thing. No chipmunk cheeks full of unwanted food. Nope, she know what to do with it all, one way or the other.

Now, she is in her bed. Where she should be. Sleeping soundly and hopefully having sweet baby dreams and that's my cue, my bed time call. Good night everyone!

The Best So Far

We had been home around thirty-six hours before we had to turn around and head back to Peoria. Make no mistake, this was not a trip full of concern but a mere post-op check-up.

I swear that Vada knows the hospital. She knows when we walk inside, where we are. Her demeanor changes, just like it did when we came home.

She was pretty laid back but a little cautious of the onlookers and of the blue and white coats walking around her.

She had lab work and a chest Xray done today and then we met with the Surgeon. He said that her labs were wonderful and the Xray was the best of Vada's that he had seen so far! He reduced the diuretic and stopped the medication to help boost her potassium. We will see him again in five weeks.

Our visit to OSF lasted about four hours but there is not much to say except our little Heart Hero is doing great!

Thank you to everyone who prayed for her. Your prayers helped make her strong. God was and is with her all of the time but was most defiantly was felt the day of her surgery and throughout her stay in the hospital!