For Christmas Madelynn received a new CD, MercyMe-Welcome to the New. I was listening to it in my car and came across this......
Thinking there is worth in what you do,
Then like a HERO who takes the stage when
We're on the edge of our seats saying it is too late
Well let me introduce you to Amazing Grace
No matter the bumps
No matter the bruises
No matter the SCARS
Still the truth is
The cross has made
The cross has made you FLAWLESS
All I could think of was My Heart Hero's scars make her Flawless. God chose me to be her parent. I was His perfect choice for her so he gave me a perfect child in His eyes.
To look at her she is too small and too skinny. She fights me at every meal and hates to eat. She will be 7 at her next Birthday but still has to ride in a 5 point harness on the school bus; she doesn't weigh enough. With all the battles we have fought and the scars she has to show for it SHE IS BEAUTIFUL and FLAWLESS.
Parents remember the long nights in the hospital, the bad news after more bad news as your child fights to live. Your memories are more powerful than anything your child remembers. But the fact of the matter is your warrior is perfect and beautiful. Whether it be the smile that melts the bad day away, the hug that releases the stress, the "I Love you" that reminds you every inch is worth fighting for, or the pure love parents have for their warrior it is ALL Flawless.
My hope for 2015 is to help remind parents even with all the physical brokenness our children are born with they are all still flawless and beautiful.
TTFN~
Tuesday, December 30, 2014
Thursday, December 4, 2014
Happy Birthday Kaitlynn!!
Happy 11th Birthday Kaitlynn!!!
To my oldest child.......
Because of you, I wanted to have more children
Because of you, I laugh more
Because of you, I want to be a better mom
Because of you, I love to watch soccer
Because of you, my life is simply better
Thank you for always making my life better.
Happy Birthday Sweet Girl!!
Love, Mama
Thursday, November 27, 2014
Remembering to Thank a nurse.....Happy Thanksgiving.....
Today I will be sitting around a large table with more food than we know what to do with. We know we are truly blessed and lucky. Because of our our experience at the children's hospital with Madelynn we are reminded daily how lucky we are. We also learned about the nursing staff. Nurses.....They are amazing people.
If is wasn't for the stellar nursing staff at Levine Children's Hospital I would have never learned to be empowered to care for my children. Every day they would ask me if I understood what the doctor said. When I didn't they would re-explain it. They encouraged me to care for my child in the hospital. They understood the idea of Family Centered Care. Making sure the whole family was included in the care of the patient.
Nurses have a tough job. They are required to work without emotion. They experience the miracle of life and sometimes the devastating end all in a days work. When Madelynn was in the hospital one of the heart warriors died. I walked out into the hall to see the nurse crying because it was her patient that passed. She was being consoled by her co-workers. The next day that nurse came to work and had to care for Madelynn.
How do you come to work, fight for someone to live, they die even after all your efforts, you go home and come back to work the next day to help the next patient. The emotional highs and lows are almost unfathomable. Witnessing just a peak into this world while we were in the hospital is almost unimaginable to me. All of their efforts are more than appreciated
Today I am very thankful for so many things. But I know that we would not be where we are today without some outstanding nurses. As they show up to work like it is any other day they won't be around a table stuffing their face. Please pray for all the hospital staff working today, the patients and their families in the hospital.
Happy Thanksgiving!
TTFN~
If is wasn't for the stellar nursing staff at Levine Children's Hospital I would have never learned to be empowered to care for my children. Every day they would ask me if I understood what the doctor said. When I didn't they would re-explain it. They encouraged me to care for my child in the hospital. They understood the idea of Family Centered Care. Making sure the whole family was included in the care of the patient.
Nurses have a tough job. They are required to work without emotion. They experience the miracle of life and sometimes the devastating end all in a days work. When Madelynn was in the hospital one of the heart warriors died. I walked out into the hall to see the nurse crying because it was her patient that passed. She was being consoled by her co-workers. The next day that nurse came to work and had to care for Madelynn.
How do you come to work, fight for someone to live, they die even after all your efforts, you go home and come back to work the next day to help the next patient. The emotional highs and lows are almost unfathomable. Witnessing just a peak into this world while we were in the hospital is almost unimaginable to me. All of their efforts are more than appreciated
Today I am very thankful for so many things. But I know that we would not be where we are today without some outstanding nurses. As they show up to work like it is any other day they won't be around a table stuffing their face. Please pray for all the hospital staff working today, the patients and their families in the hospital.
Happy Thanksgiving!
TTFN~
Monday, November 10, 2014
Farewell to Fall Soccer 2014................
I am not going to lie the last three months have been INSANE. For some ridiculous reason we signed all three of my kids up for three different soccer teams. I have travelled to lots of fields and watched my children progress for the last 12 weeks. This past weekend was the finally and what an ending it was.
Our day started at 6 am. We had to be at the field by 7:30 am for an 8 am game and it was FREEZING......
Jackson's game was up first. Sadly they did not win but he gave it his best shot. After 12 weeks he was well conditioned and his leg was ready to make contact for the score.
Our day started at 6 am. We had to be at the field by 7:30 am for an 8 am game and it was FREEZING......
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| Note the frost on the field...... |
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| This face melts my heart every time. |
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| He was making laps to stay warm.
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Jackson's game was up first. Sadly they did not win but he gave it his best shot. After 12 weeks he was well conditioned and his leg was ready to make contact for the score.
I love to watch him play. Some days I am totally amazed at how much he has learned. Sometimes I would hear other parents talk about what a great player he is. It was fun to tell them, "That is my son." One day he won't let me kiss him to pieces and will roll his eyes when I tell him I love him before a game. For now he is just my boy who thinks I am still cool.
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| Love my boy..... |
As soon as Jackson's game was over we had to pack up and head to another field a few miles away, for Madelynn's last game of the season. I have truly enjoyed watching her play. Sometimes I am standing there in the moment and it takes my breath away when I remember how far we have come.
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| Yes she is my mini me. |
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| Group hug before the game. |
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| Then the group hug fell over......LOL!! |
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| She mastered the throw in. |
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| She was ready to give it all she had. |
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| Waiting on the ball.... |
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| She was never afraid to just dig in and play. |
Madelynn worked hard through the season. At the beginning of the season, the kids would just run out on the field when they were ready to play; subbing themselves. It was kind of funny. Other days the kids would get bored waiting for their turn to play. I watched Madelynn hang upside down from the bench entertaining herself until it was her turn to play again. By the end of the season, she didn't want to be taken out of the game and tried her best to score.
When Madelynn's game was over we had enough time to stop home, grab a sandwich, get Kaitlynn changed and back out to the field where Jackson played earlier in the day. This was the game I was most nervous about. Let me tell ya Kaitlynn and her teammates brought their A-game. I was so proud at how well the Lady Hurricanes had played.
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| I love to watch her play. |
This year Kaitlynn told me she wanted to play goalie. I almost fell on the floor. In my most composed voice, I told her the decision was up to her coach; she needed to talk to him. She asked, for about half the season she played goalie for part of every game. She was good. I could not believe how far her little body could punt the ball. I just watched in awe. The parents on her team were very supportive of the decision.
For me as her mom, the best moment was when one of the opposing teams head coach tracked us down after the game to tell us what an amazing job she did. We mustered out Thank You and I walked away shaking my head stunned at how well she played. This season was an amazing experience.
For the tournament this weekend, Kaitlynn played the first half as the goalie and nothing got past her it was great. She was all over the ball. In the second half she was the most aggressive I have ever seen her. Some of the parents asked me what I fed her. I told them I asked her to show me how bad she wanted to win. She showed me. It was one of her best games.
When Kaitlynn's first game was over we had enough time to stop at the store, go home and let her have a brief rest. We then left to go to basketball. Yes I said basketball. The first practice for Kaitlynn and Jackson's basketball season was in between Kaitlynn's soccer games. After both practices we headed back to the soccer field for a night game.
Sadly Kaitlynn's team lost. They put up a good fight and I was very proud of how well the girls had done. Kaitlynn's coach passed out trophy's to the girls and spoke about how proud he was of them. When that was over Kaitlynn came and buried her face in my coat and cried. She wanted to win so bad. She had poured everything she had into that game and wanted it so bad she could taste it. But the win just didn't come.
By the time all of this was done we stopped to get a quick bite and went home and all crawled in bed. I am very sad the season is over, but excited to see her play basketball as we move forward. Thank you to everyone who came out and supported the kids and watched them play.
Onward we will go to KEEP MOVING FORWARD.
TTFN~
Monday, November 3, 2014
Using what I learned.........and never giving up. I love you Jack-Jack!
Two years ago our NC legislators passed a law requiring all third graders to pass an EOG (End of Grade) test to move on to the fourth grade. Basically it is a status test. It is to help prevent students that come from disadvantaged back grounds from being held back because of that background. It also prevents students from a wealthy background from being promoted based on background and not skill. It is a great idea but it was not properly thought through and brought to fruition the way it was intended. Instead legislators are putting out fires as they flare up in the process.
Sadly the students that have to put up with this ridiculous comedy of errors are the ones truly effected. For starters at the end of the school year eight, yes I said EIGHT, year old kids have to sit in a two and a half to three hour exam. They can not have a break of any kind, bathroom, drink, nothing. They are required to read passages and answer questions that are supposed to be age level appropriate. I don't even remember any final at any age taking this long let alone taking this type of exam at eight years old.
I have read posts from parents about the anxiety, tears and lack of sleep days and weeks before the test. As a parent who has experienced this first hand, the insanity that in sues because of a status test is ludicrous.
So let me tell you our story. My daughter Kaitlynn took this test and was part of the original first group. So her score did not come back until October of the next school year so educators could analyze it. Based on her grades and the fact that the results would not be back before the end of the school year Kaitlynn was promoted to the fourth grade. In October of her fourth grade year, we were told she did not pass the reading EOG and that she was at the beginning of third grade reading level at the beginning of the fourth grade. So she was a whole year behind and had she not been in this starter group she would have failed the third grade. However, she made the AB Honor roll almost every grading period in the third grade.
Since they could not go back and put her in the third grade after they promoted her to the fourth grade (one of the fires I was talking about) they had to help her reach the status quo. She worked really hard. I made her read out loud to me every night and we discussed what she read. By the end of the fourth grade she was at an end of fourth grade reading level. Which was PHENOMENAL!!! She made the AB Honor Roll and she passed the fourth grade EOG's.
Then we have Jackson in the third grade taking these tests for the first time. He also making the AB honor roll several times. He was at an end of third grade reading level at the end of third grade. He was really nervous about the test. He failed it. He was allowed to take a different form of the test a few days later (another fire I was talking about) he failed it. Then he was allowed to take the first test over again (another fire). This was all over a TEN day period. He failed it again. I can not even tell you how many tears were shed by my eight year old son over a STATUS TEST!!
Side note here, there is also a Math EOG starting in the third grade. Jackson passed it on the first try with almost a perfect score. To which I was told was ALMOST IMPOSSIBLE. The Math EOG is ALL story problems. You have to have a good handle on reading comprehension to even pass the Math let alone get almost a perfect score. The school counselor also admitted no reading comprehension problem was ever recognized so he was never in any type of preventative class. Also very unusual. The only way Jackson could move on to the fourth grade was to complete an intensive reading summer school program or I pay for 30 hours of tutoring.
So Jackson gets up at 6 am on his summer vacation to ride the bus for over an hour to go to class for three hours. First day of class Jackson comes home his third grade teacher is also his summer school teacher. I called and raised cane demanding they move him out of her class. She was a nice teacher and always had great thing to say about Jackson being in her class but if she can't teach him in nine months how can she help him in 6 weeks of summer school. He was moved the next day to another class. A fresh perspective maybe she could find something to help him.
A week after this summer program started I received a letter that right before their summer recess our brilliant legislators passed another law saying the summer school was no longer mandatory(and yet another fire). He still had to take the test again at the end of the summer but he didn't have to go to the class he could just show up for the test. I am not making this up.
Throughout this whole process I have been very honest with Jackson. I discussed with him all of his options at the time (beginning of June). He chose to go to summer school. When the law changed, I didn't want him to think I lied to him, I told him the truth about the summer school no longer being mandatory did he still want to attend (another fire to be put out). He said, "Yes". So for six weeks over the summer he got up at 6 am four days a week and went to class. August 7th he took the test again and again failed it.
We were told if he completed summer school even if he failed the summer test, he would move on to fourth grade. With this fourth grade placement came promised intensive study help. I contacted the school two weeks before school started to find out the plan. I contacted the school every single week for nine weeks trying to get someone to help my son. All I was ever told was we are working on it. Finally I demanded a conference with the principal and finally received my answer. They would finally implement a program to help him the second week of October.
I received a call ten days later that Jackson would be retaking the test again October 29th. So they drug their feet to implement a program to help him and two weeks later he has to take the test again. I was so angry. I apologized to Jackson that he had to take the test again so soon. I told him I loved him, to do his best, it did not matter whether he passed or failed (He was so stressed about taking it again and failing again). Friday October 31st I received a voicemail from the principal that he passed. YES!! HE DID IT!!
But not because of any help from the North Carolina Education system.
Jackson is the youngest fourth grader in the school and will have to fight for everything. He is very smart and I was told to start him in school early. When the school system accepted him as a student they knew how young her was and agreed to the task. He did not miss an excessive amount of school days, he made all A's and B's almost every grading period, he was never a disruption in the class he fulfilled his end of the bargain as the student. I had him independently tested he does not have a reading problem.
Jackson passed that EOG because he did the required work asked of him, I worked with him daily to make sure he understood the requirements. So the only people that get to take credit for Jackson's passing of this test if HE and I. I am so very proud of him for never giving up. Even though there were many days he tried and I would not let him.
Jackson and Kaitlynn were still in preschool when Madelynn had her open heart surgery. I did not understand the empowerment a parent needed to fight for their child. I was barely getting by raising three kids under five and working a full time job. But when our whole world fell apart, I learned to fight back and fight back with a vengeance. What I learned from Madelynn's journey taught me to fight for all of my children no matter what it takes. I am very thankful for what I learned.
Most importantly I am so proud of Jackson for never giving up.
Jackson's war still isn't over to keep up with the kids in the class. He just leveled the playing field a little by winning this fight. For now we will follow our motto and, "KEEP MOVING FORWARD".
Sadly the students that have to put up with this ridiculous comedy of errors are the ones truly effected. For starters at the end of the school year eight, yes I said EIGHT, year old kids have to sit in a two and a half to three hour exam. They can not have a break of any kind, bathroom, drink, nothing. They are required to read passages and answer questions that are supposed to be age level appropriate. I don't even remember any final at any age taking this long let alone taking this type of exam at eight years old.
I have read posts from parents about the anxiety, tears and lack of sleep days and weeks before the test. As a parent who has experienced this first hand, the insanity that in sues because of a status test is ludicrous.
So let me tell you our story. My daughter Kaitlynn took this test and was part of the original first group. So her score did not come back until October of the next school year so educators could analyze it. Based on her grades and the fact that the results would not be back before the end of the school year Kaitlynn was promoted to the fourth grade. In October of her fourth grade year, we were told she did not pass the reading EOG and that she was at the beginning of third grade reading level at the beginning of the fourth grade. So she was a whole year behind and had she not been in this starter group she would have failed the third grade. However, she made the AB Honor roll almost every grading period in the third grade.
Since they could not go back and put her in the third grade after they promoted her to the fourth grade (one of the fires I was talking about) they had to help her reach the status quo. She worked really hard. I made her read out loud to me every night and we discussed what she read. By the end of the fourth grade she was at an end of fourth grade reading level. Which was PHENOMENAL!!! She made the AB Honor Roll and she passed the fourth grade EOG's.
Then we have Jackson in the third grade taking these tests for the first time. He also making the AB honor roll several times. He was at an end of third grade reading level at the end of third grade. He was really nervous about the test. He failed it. He was allowed to take a different form of the test a few days later (another fire I was talking about) he failed it. Then he was allowed to take the first test over again (another fire). This was all over a TEN day period. He failed it again. I can not even tell you how many tears were shed by my eight year old son over a STATUS TEST!!
Side note here, there is also a Math EOG starting in the third grade. Jackson passed it on the first try with almost a perfect score. To which I was told was ALMOST IMPOSSIBLE. The Math EOG is ALL story problems. You have to have a good handle on reading comprehension to even pass the Math let alone get almost a perfect score. The school counselor also admitted no reading comprehension problem was ever recognized so he was never in any type of preventative class. Also very unusual. The only way Jackson could move on to the fourth grade was to complete an intensive reading summer school program or I pay for 30 hours of tutoring.
So Jackson gets up at 6 am on his summer vacation to ride the bus for over an hour to go to class for three hours. First day of class Jackson comes home his third grade teacher is also his summer school teacher. I called and raised cane demanding they move him out of her class. She was a nice teacher and always had great thing to say about Jackson being in her class but if she can't teach him in nine months how can she help him in 6 weeks of summer school. He was moved the next day to another class. A fresh perspective maybe she could find something to help him.
A week after this summer program started I received a letter that right before their summer recess our brilliant legislators passed another law saying the summer school was no longer mandatory(and yet another fire). He still had to take the test again at the end of the summer but he didn't have to go to the class he could just show up for the test. I am not making this up.
Throughout this whole process I have been very honest with Jackson. I discussed with him all of his options at the time (beginning of June). He chose to go to summer school. When the law changed, I didn't want him to think I lied to him, I told him the truth about the summer school no longer being mandatory did he still want to attend (another fire to be put out). He said, "Yes". So for six weeks over the summer he got up at 6 am four days a week and went to class. August 7th he took the test again and again failed it.
We were told if he completed summer school even if he failed the summer test, he would move on to fourth grade. With this fourth grade placement came promised intensive study help. I contacted the school two weeks before school started to find out the plan. I contacted the school every single week for nine weeks trying to get someone to help my son. All I was ever told was we are working on it. Finally I demanded a conference with the principal and finally received my answer. They would finally implement a program to help him the second week of October.
I received a call ten days later that Jackson would be retaking the test again October 29th. So they drug their feet to implement a program to help him and two weeks later he has to take the test again. I was so angry. I apologized to Jackson that he had to take the test again so soon. I told him I loved him, to do his best, it did not matter whether he passed or failed (He was so stressed about taking it again and failing again). Friday October 31st I received a voicemail from the principal that he passed. YES!! HE DID IT!!
But not because of any help from the North Carolina Education system.
Jackson is the youngest fourth grader in the school and will have to fight for everything. He is very smart and I was told to start him in school early. When the school system accepted him as a student they knew how young her was and agreed to the task. He did not miss an excessive amount of school days, he made all A's and B's almost every grading period, he was never a disruption in the class he fulfilled his end of the bargain as the student. I had him independently tested he does not have a reading problem.
Jackson passed that EOG because he did the required work asked of him, I worked with him daily to make sure he understood the requirements. So the only people that get to take credit for Jackson's passing of this test if HE and I. I am so very proud of him for never giving up. Even though there were many days he tried and I would not let him.
Jackson and Kaitlynn were still in preschool when Madelynn had her open heart surgery. I did not understand the empowerment a parent needed to fight for their child. I was barely getting by raising three kids under five and working a full time job. But when our whole world fell apart, I learned to fight back and fight back with a vengeance. What I learned from Madelynn's journey taught me to fight for all of my children no matter what it takes. I am very thankful for what I learned.
Most importantly I am so proud of Jackson for never giving up.
Jackson's war still isn't over to keep up with the kids in the class. He just leveled the playing field a little by winning this fight. For now we will follow our motto and, "KEEP MOVING FORWARD".
Thursday, October 30, 2014
When life changes forever.......
October is the Pinkest Month I have ever seen. Most people are celebrating Breast Cancer Awareness Month and it IS something to be celebrated. Kaitlynn's god mother (aka G-ma) is a Breast Cancer Warrior and more importantly SURVIVOR. We are very glad G-ma is still around.
For our family, October has taken on a new meaning more red than pink. October 12, 2008 at 5 weeks old we were told Madelynn had a Congenital Heart Defect (CHD). When we finally saw the Cardiologist October 29, 2008 we were told Madelynn had a Coarctation of the Aorta, her Aorta was growing straight up and not curved behind the heart, she had a hole in her heart and the Aorta needed an extended repair requiring Open Heart Surgery (OHS) first thing the next morning. There were some extended tests required to prepare for the next day and we would walk over to hospital shortly.
As the tests progressed I heard the Head of Pediatric Cardiology say, "There is no medical reason she should be alive." But she was.
Madelynn's heart was successfully repaired October 30, 2008 and she was given a second chance at Life. A chance I have never taken for granted. She did suffer a collapsed lung, paralysis in her diaphragm and contracted strep pneumonia in the hospital after surgery. All of these things are medically correctable it just made her recovery a little bit more complicated and much longer.
A few days before Thanksgiving 2008 Madelynn was released from the hospital but still very weak and fragile. I was so excited to spend my favorite Holiday, Thanksgiving, at home. No more hospital staff, food, couches for sleeping or strange showers to use. My family had planned to spend Thanksgiving at my sister's in OH. We were also invited but Madelynn was unable to travel. We needed to stay close to the hospital.
Kaitlynn's god-parents were going to have Thanksgiving alone so we invited them to our house. Our neighbors were going through a difficult time with family so they joined us too. It is the one and only time we had Thanksgiving at our home. It was weird to not be with my parents and siblings but we were so THANKFUL for all we just endured surrounded by some of those who stepped in at a moments notice to help with whatever we needed. It was the right way to celebrate Thanksgiving 2008.
Winter 2008 through Spring 2009 were the most physically and emotionally exhausting I have ever experienced. All of the specialist visits for all her after OHS care and even a second trip to the hospital because she was not recovering well, was almost more than I could bare. When my birthday came around in January 2009 I received some of the most beautiful, thoughtful cards; encouraging me not to give up and always celebrate the little victories. It was that little push that I needed to "KEEP MOVING FORWARD". A few days ago, I found all of those cards. As I read all of them again, I cried. Not because it was sad but because it was amazing to feel so loved and surrounded by people who truly cared about us.
In May 2009 we were invited to Atlantic Beach to attend Phil's brother's, Jason's, wedding to Franka. I was SOOOOOOOO EXCITED. We were allowed to be hours from home, we were going to the beach and it was sure to be a fun time. I was asked to take pictures of the Joyous day, little did I know how important those pictures truly would become. I have pictures of Madelynn playing on the beach for the first time and she was finally well enough to enjoy it.
As long as Madelynn's positive progress continued we decided to take her to Florida for Thanksgiving for her first out of state visit. I am not sure I can put into words what it was like to travel for Thanksgiving 2009.
My best friend, Justine, invited us to stop by for a few days. I am not going to lie no matter how emotionally beaten I am; a hug from her makes EVERYTHING in my life right again. When we leave for this annual Thanksgiving trip nothing else matters, NOTHING. I usually take over 1000 pictures, because life is so short and two precious not to savor EVERY moment. After this rejuvenating visit we head to South Florida to See Nana Patti and Papa Dave. The sun, the beach, bicycle rides, walks to the park and LOTS of Laughs cures everything.
This first visit in 2009 was a declaration of freedom. Freedom to leave the state with a child who was well on her way to a new life. Freedom to acknowledge that only the five of us matter for 10 days. Freedom to not be judged for any decision we might make; and if we were it was just someone else's opinion. Something I have never let myself believe before.
Madelynn is my "Heart" Warrior, but I am a "Heart" Warrior's Mom. There is nothing tougher that that. I surrendered my child to perfect strangers, trusting that they would take better care of her than I could. I waited 8 hours to see my child with stitches up her chest and tubes and wires coming from every orifice of her body. I have seen my child crash and come back fighting harder than before. I have slept in strange places, read bloody doctor's notes from surgery and fought to learn how to care for my child days after surgery. She is my gift from God and my responsibility to make the most out of this life.
As we celebrate Madelynn's 6th "Heart" Birthday, I ask you to find that little piece of freedom you have been denying yourself. For you "Heart" Moms in the thick of it when you feel there is no light at the end of the tunnel, allow yourself an hour to yourself without guilt. For the Dads working more hours in a week than humanly possible, sit and watch cartoons with your little one and shut the rest of the world out. For ALL the Medical professionals who witness the worst of the worst and still get up and come back to work the next day, do something that makes you smile and wash away the ugly, just for a little while.
Happy Heart Birthday Madelynn!! Thank you for changing my life forever.
TTFN~
Mama
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| Who would have ever thought her heart was broken. |
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| Madelynn's broken "boot" shaped heart. |
As the tests progressed I heard the Head of Pediatric Cardiology say, "There is no medical reason she should be alive." But she was.
Madelynn's heart was successfully repaired October 30, 2008 and she was given a second chance at Life. A chance I have never taken for granted. She did suffer a collapsed lung, paralysis in her diaphragm and contracted strep pneumonia in the hospital after surgery. All of these things are medically correctable it just made her recovery a little bit more complicated and much longer.
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| Madelynn's repaired heart. It is hard to see here but there is wire holding her breast bone back together. |
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| Madelynn fighting after surgery. |
Winter 2008 through Spring 2009 were the most physically and emotionally exhausting I have ever experienced. All of the specialist visits for all her after OHS care and even a second trip to the hospital because she was not recovering well, was almost more than I could bare. When my birthday came around in January 2009 I received some of the most beautiful, thoughtful cards; encouraging me not to give up and always celebrate the little victories. It was that little push that I needed to "KEEP MOVING FORWARD". A few days ago, I found all of those cards. As I read all of them again, I cried. Not because it was sad but because it was amazing to feel so loved and surrounded by people who truly cared about us.
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| Celebrating the little victory of FINALLY being able to sit up. It took months longer than it should have, but finally a victory. |
In May 2009 we were invited to Atlantic Beach to attend Phil's brother's, Jason's, wedding to Franka. I was SOOOOOOOO EXCITED. We were allowed to be hours from home, we were going to the beach and it was sure to be a fun time. I was asked to take pictures of the Joyous day, little did I know how important those pictures truly would become. I have pictures of Madelynn playing on the beach for the first time and she was finally well enough to enjoy it.
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| On our way to Uncle Jason's wedding. The sweet freedom of the wind in your hair, beach bound, she was SO Happy!! |
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| It was a great time for all of us. |
My best friend, Justine, invited us to stop by for a few days. I am not going to lie no matter how emotionally beaten I am; a hug from her makes EVERYTHING in my life right again. When we leave for this annual Thanksgiving trip nothing else matters, NOTHING. I usually take over 1000 pictures, because life is so short and two precious not to savor EVERY moment. After this rejuvenating visit we head to South Florida to See Nana Patti and Papa Dave. The sun, the beach, bicycle rides, walks to the park and LOTS of Laughs cures everything.
This first visit in 2009 was a declaration of freedom. Freedom to leave the state with a child who was well on her way to a new life. Freedom to acknowledge that only the five of us matter for 10 days. Freedom to not be judged for any decision we might make; and if we were it was just someone else's opinion. Something I have never let myself believe before.
Madelynn is my "Heart" Warrior, but I am a "Heart" Warrior's Mom. There is nothing tougher that that. I surrendered my child to perfect strangers, trusting that they would take better care of her than I could. I waited 8 hours to see my child with stitches up her chest and tubes and wires coming from every orifice of her body. I have seen my child crash and come back fighting harder than before. I have slept in strange places, read bloody doctor's notes from surgery and fought to learn how to care for my child days after surgery. She is my gift from God and my responsibility to make the most out of this life.
As we celebrate Madelynn's 6th "Heart" Birthday, I ask you to find that little piece of freedom you have been denying yourself. For you "Heart" Moms in the thick of it when you feel there is no light at the end of the tunnel, allow yourself an hour to yourself without guilt. For the Dads working more hours in a week than humanly possible, sit and watch cartoons with your little one and shut the rest of the world out. For ALL the Medical professionals who witness the worst of the worst and still get up and come back to work the next day, do something that makes you smile and wash away the ugly, just for a little while.
Happy Heart Birthday Madelynn!! Thank you for changing my life forever.
TTFN~
Mama
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