Happy Halloween............

Happy Halloween!!!!

It was a little bit cooler tonight when the kids went trick or treating so Madelynn wore the monkey costume compliments of the Schmichel's (Thank's Aunt Jenni and Uncle Dave). Kaitlynn and Jackson were too excited to sit still. However, Madelynn was having a ball walikg around and making monkey sounds so I decided to share some of them.

TTFN~

A Different Perspective

So two years ago we were pacing the floor in the hospital, waiting for tests to be completed, and trying to mentally prepare for this:

There is no way we could have ever been prepared for this.

Last year, we were preparing for a Celebration of sorts. We decided to throw a party to say THANK YOU. We were finally able to breath, to sit down with our family, friends and co-workers and tell them how much we appreciated everything they did to help us in whatever capacity we needed. We would have never been able to make it without them.

This year, although quiet and peaceful it will always be lingering around remembering where we have been. But the pure simple joy that today brought is something I would like to always cherish.

Today started out very early as I greeted Phil's parents about 12:30am when they arrived at the house. After sleeping a few hours and getting Kaitlynn and Jackson off to school, Madelynn and I took Phil's parents to Trader Joe's. After lunch, I put Madelynn down for her nap and headed to the elementary school to Kaitlynn's class. Her teacher was doing something really fun for the afternoon and needed volunteers.

For most people not only is this an uneventful day it might even border on boring. But two years ago I had to trust someone else to care for two of my children while I lived at the hospital, Phil traveled back and forth I missed so many day to day things it made me cry. Today, I savored the hour and a half that I spent at the school hanging out with Kaitlynn and her classmates.

After dinner, the five of us and Phil's parents headed off to the rec center for the Halloween Spooktacular. The kids dressed up and we took them to a free indoor activity where they played games for candy and prizes, jumped in the bounce house and had their faces painted. They had a ball and were completely exhausted and I didn't miss a minute of it.

Trying to be proactive about my father calling me to make sure I get a picture of the kids dressed up for Halloween I tried to take a photo. I figured the weather was nice, they were already dressed up, get the picture, send it to dad and surprise him. As you can see the kids were too excited and not very cooperative.

Not too bad but could be better....

She liked the Pom-Pom's just a little too much.....

If her eyes would have been at facing the camera we would have been in business....

So although I did not get the Halloween picture I wanted lucky for me I still have another chance when they actually trick or treat this weekend.

Before I forget, THANK YOU Uncle Jon and Aunt Dixie for the University of Notre Dame cheer leading uniform. When Madelynn was born they sent it as a gift. I carefully put it away and saved it, never thinking I could use it for Halloween. Since our weather has been crazy, 85 degrees and humid at the end of October, I figured it would be a great costume that she wouldn't melt in. She loved her little pom-pom's. I think I was only whacked in the head twice.

This was a much better way to spend the 29th of October then that in 2008.



TTFN~

Thank You Dr. Kendrick......

Today, or should I say this date in my mind I will always remember Dr. Alfred Kendrick. You see Dr. Kendrick in my mind will forever be the one who saved Madelynn's life.

Yes, we had a huge staff of very gifted medical professionals but, had he not found the condition Madelynn would have died at home, daycare who knows where.

Except for seeing us pass by getting x-rays in the Urgent Care facility it has been almost two years to the day that he has seen her. As soon as he saw us come in it was like we were celebrities. He told the nurse, "Please put them over here I will see them asap." We did have to wait a short time but when he walked in the room. He was just floored at how well she looked.

Madelynn did have a sinus infection and was treated. But he could not stop staring at her. He said it is very rare that in the Urgent Care business that you get to follow up with patients, especially due to the HIPPA Laws.

As we left that visit, he thanked us for bringing her to him. He believes treating Madelynn is a privilege. As I thanked him I tried to shake his hand. He said that it would never due I must give him a hug. As we were leaving it was almost closing time for the urgent care and word got around that we were there. The x-ray techs, nursing staff all came to see how good she looked.

So this day will forever be bittersweet as it began a very treacherous journey. I hope in the end it will eventually be filled with more smiles than tears as the years go on.

TTFN~

Things I have learned Part: 4

I can't fix everything no matter how badly I want to, nor is it my job too. Some days I have the patience of a nat buzzing around. Throughout my adventure with Madelynn I have learned patience and I have learned to wait and wait and wait.

Whether I was just waiting, watching and praying for her to get well, waiting in the doctor's office, waiting at the pharmacy I was always waiting. I believe most of the time I handled it well; although we all have our days.

What I did not handle well was everything else that came with it. The stress of taking a leave of absence from work, not being able to work a full time job, then the full time job wasn't available anymore. How in the world would I be able to take care of Madelynn, work a part time job and with the lack of money coming in, making sure that everything seemed ok on the outside to Kaitlynn and Jackson.

For a long time I put up a pretty good front and tried to control it all. I literally carried a portable filing cabinet around. I tried to handle it all, going to social services getting help so Kaitlynn and Jackson could stay in daycare while I worked part time and took Madelynn to all of her appointments. We were able to get some help with some of the medical bills but I had to fight for that and it took me 6 months to get that money. Emotionally it was simply too heavy to carry.

Until finally one day, all the money was gone. I had no idea how we would make it. But that was just it. I didn't have to do it, all I had to do was trust God to show us the way.

One of my favorite stories was around my birthday. My mom asked what I wanted. I told her I didn't need anything because she had done enough already. Her response was, "Suit yourself I am still going to buy you something don't blame me if you don't like it. Two days later I was stressing. I paid all the bills but we were really short on grocery money.

I called my mom and we were going to the store together. She had no idea how much we needed money for groceries and I didn't tell her. As I was driving to the store I just prayed for God to show me that everything would be ok. I asked for guidance to buy the right things and not be selfish with the items I would buy.

As we were turning down the street to go into the store parking lot my mom says, "Oh by the way I figured this year I would just give you some money for your birthday to use how you needed. I transferred it this morning." It took all I had not to cry. As usual it was enough to get us through.

"Open my eyes to all that is before me. Teach me how to wait for life to unfold in it's own way."

This is probably the biggest lesson I have learned this year. I am reminded daily that I am not in charge and I need to trust that God will take care of it as long as I do my part. As long as I am responsible with our money, God will make sure the we always have enough.

Phil would call me and say he got paid from this job or that job and ask me if it was enough to cover the short fall. I used to say I need to check and let you know. Now I either know to the penny what we need so I can answer him or I just tell him it will be enough. I don't want him worrying that it wasn't enough mostly I trust that God will make sure it is enough.

I have also learned that it is not about I or me anymore. It is not my burden to carry alone anymore. I carry it with Phil to remind us to be wise in how we spend our money but I also give the burden over for God to carry.

Honestly, I am not sure I would have learned this as well had I not walked this journey. Overall, it truly had made me a better person and I am grateful for it.

TTFN~

Things I have learned Part:3

Sometime last year during the Summer I learned that Madelynn's heart surgeon had left the hospital. I was very disappointed. This doctor had a little place in his heart for Madelynn. I wanted him to see her succeeding in life. I wanted him to see that his extraordinary gift and talent of repairing these tiny little hearts created incredible joy.

One day I was compelled to find this doctor again. I only knew the state and possibly the city he now resided in. Lucky for me his exemplary talent makes him easy to find. I wrote him a letter telling him of her amazing progress (including pictures) and thanking him because with out him surly she would have died.

Stunningly enough he hand-wrote a letter back. I never expected to hear back from him, not to mention to take the time out of his insanely busy schedule to hand write the letter. He even addressed the letter himself. Today a copy of the letter I wrote and his response letter are in Madelynn's treasure box.

Since that letter I found out when we were at heart camp that he is now plays a major role in the pediatric cardiothoracic surgery at Boston's Children's Hospital. For those that don't know, in his field this is the ultimate, cream of the crop, you can't get better than this position. I was very excited for him.

For whatever reason, one day several months later it finally struck me. In God's infinite master plan, Madelynn was to be born when she was because this doctor would be there to save her life. Not only did he save her life but we were told on her birthday this year that the repair was executed in such stellar fashion you can almost not tell it was ever repaired or broken to begin with.

On top of that, we took her to the urgent care to see the doctor who initially found her CHD. Madelynn was treated for a sinus infection a few weeks ago and when he was listening to her heart he said looking at her today you can't tell anything was ever wrong with her heart.

"Suddenly the things that seemed so certain, prove themselves to have been stepping stones not the destination."

This is so true on so many levels.

There are truly no words to express how humbled I am that as I was screaming at God for giving me a child and with a broken heart to boot; He already had everyone in place to save her life and change mine forever.

TTFN~

Things I have learned Part:2

Over the last two years I can tell you I have felt the true definition of Rage and Defeat. To have Rage and Anger over take you is very exhausting. Sometimes you have to let it takes it's course and get it out or you can not move on.

It is no secret that I was really angry when I found out that I was pregnant with Madelynn. Don't get me wrong all children are a gift from God. But I already had two truly beautiful gifts and a third was just plain selfish. There are hundreds even thousands of families begging God everyday for the gift of a child why did I need another one. Still not understanding why I accepted it and moved one so I could have a healthy pregnancy.

The Rage and Anger set in a few days after Madelynn's surgery. Thinking....more like yelling at God, "So you insist that I have this child and then she is born with a broken heart...talk about unreal." I could feel the anger all the way down to my core. To make matters worse she suffered a serious complication and was very sick. The illness was due to the ventilator. I just had to watcher her struggle every day to fight and get well. I was beyond defeat.

If it wasn't for a few friends that would call and check on me the nights I was sleeping at the hospital, I would cry myself to sleep or be so angry in those wee hours of the morning I couldn't sleep. Then one day it was gone. I can not tell you why or how, there was no epiphany that told me she would be alright or maybe there was and I don't remember.

What I do remember is being at peace with the thought that whatever the reason she needed to be born this way....She would live, I mean really live.

Watching her today, her pure joy for life reaches so many people. Seeing strangers in public just smile when they see her, watching her run up and hug the grandmothers I work with who are missing their own grandchildren or just seeing Phil's face light up when she runs to him screaming, "Daddy's Home!" every single day.

I am reminded..... "I should look at life with gratitude; even when things fall apart something greater Always Prevails."

She is my greater that prevailed.

TTFN~

Things I have learned: Part 1

As we are approaching Madelynn's second Heart birthday I wanted to start sharing the things I have learned over the last year.

Shortly after Madelynn's surgery there were many days I would write. I would write letters to Madelynn sharing my exact feelings that day as we were living this terrible nightmare. Until recently I never realized how much I wrote and wrote and wrote.

Last year I decided to make changes in the house as to who was in each room. Phil rolled his eyes and me and I am sure all he could think was, 'what in the world do I need to help with now'. Knowing that look I told him not to worry I did not need his help I would handle it myself. And away I went......

I had to move the girls and re-paint the room to make it Jack's room, move everything out of the bonus room and move the girls in to the bonus room, move the bonus room items into Jack's old room. Sounds simple enough right. It took me about 3 months after work, on days off and any chance I could find. By the time we celebrated Madelynn's first heart birthday I was finished. That is except for a few boxes of stuff I had no idea what to do with.

In hindsight, I suppose this was my therapy on how I kept it together during those ridiculous times.

For almost a year the boxes sat. That is until one day I got sick of looking at them and started going through them. Oh the stuff I found.....gifts from friends I had in another life, a few pictures of much younger days and lots and lots of writings that I knew some day I would do something with.

At a Levine Cardiac Kids meeting there was a therapist that came in an spoke. Not about the parents or child's heart journey but about the other healthy children in the house and how you can help them cope and bring the closest thing to normalcy into your home as much as possible. She really was a great speaker and I learned so much that evening.

Then one thing stopped me in my tracks. 'For all of you parents who are dealing with this on a regular basis remember you were chosen for this job'

CHOSEN.....are you kidding me. There are many things in life I want to be chosen for but this was not one of them. I want to be chosen to win awards and be acknowledged for all of my hard work and success'. This was not what I had in mind. But I suppose what I had in mind was not the road I was to travel.

When I looked up the definition of the word chosen I came up with ...preferred above others....once I accepted that life changed. I was chosen above all others to be Madelynn's Mom. To get her healthy again I had my work cut out for me.

I learned that no was not in my vocabulary and no matter what the result, we could always do better. In less than a year, Madelynn went from being a very sick, 5 month old who could not hold her head up and not being able to keep a bottle down to......walking, talking, learning to love, eggs, peanut butter and chicken nuggets.

What I supposed I learned most is the following........

"I am challenged to receive life just as it is to experience all that is serene and all that is difficult."

TTFN~

School Picture Day!!!

Wednesday was Madelynn's Picture Day at her new school. So my day started at 5:30am making sure Phil was up and in the shower. After getting myself ready I then needed to get Kaitlynn and Jackson ready so I could have a few minutes to get Madelynn as cute as possible for her pictures (not like that takes much).

Madelynn and I talked about her pictures and how beautiful she was in her her dress. You should have seen her twirling in the dress. Then we talked about how she needed to smile big for her pictures. As we practiced that fact, she needed to smile for the camera I managed to take a few pictures of my own. Did I mention I still got everyone out the door and made it to work on time.

Well if my picture is any representation of what the professional photographer will do I can not wait to see them. Until I get those results back this will have to do.

TTFN~

p.s. when I think about where we have come from this photo almost makes me cry.........

Fall School Pictures

Thursday and Friday Jackson and Kaitlynn brought home their school pictures. For Jackson's first school picture it turned out really cute. My only comment is too words, "Opie Taylor".


As for Kaitlynn she has experienced a camera most of her life and just knows how to smile on cue. She looks so old in this picture. However, I am not sure the short hair will stay. She is tired of me blow drying it to control her cowlicks she might just let it grow long. This won't hurt Phil's feelings one bit. These are the pictures that will be in the school year book.



Have lots to post about but thought I would share the new pictures of the kids. Yes, I know I have three children but they go to two different schools. Madelynn's pictures I believe will be taken this week and will post as soon as I get them.

TTFN~