God can make the very worst things that ever happened in your life work for your very best. Zac Poonen
After Madelynn's OHS in 2008, she suffered a collapsed lung, paralysis in her diaphragm and strep pneumonia. She has been seeing a pediatric pulmunologist since her first release from the hospital. I can't even tell you how much I hated visiting this doctor. I hated the breathing treatments, of course not as much as Madelynn hated them. Every time I felt like she was doing well and jumped 5 steps forward we would crash down 10 steps. This whole journey brought so many tears, frustration and just pure sadness.
Last year Madelynn was old enough to go through some very detailed testing. She did not do as well as the doctor had hoped but she did ok. The doctor sent us home with some homework; let he play sports with no limitations and she had to do some breathing exercises. A little over a year later we returned to go through the testing again today.
She was very excited to do the testing because she has been through it before. She felt like an expert. She followed directions. It didn't take nearly as long as last year. When we met with the doctor to review the results I was shocked. I could barely collect my thoughts to ask intelligent questions. He told us she did great. If a child without heart and lung issues took theses tests, Madelynn scored higher that they did.
I was able to mutter out an intelligent question, "What does that mean about her supposed permanent damage?" One of two things has happened. Either her body has healed herself or her body has compensated for the damaged diaphragm and learned how to live with it. I asked does it matter which one it is. He told us the are some very specific tests that would tell us but he would not recommend them.
Then I heard him say something about 2 years. I quickly blurted out, "What!!" He repeated it and I heard it loud and clear. Unless she has difficult with an illness We do not need to see him for 2 years. I was NOT expecting that. So now she sees the heart and lung doctor every two years.
There are truly not enough words to describe the pure JOY I felt driving home. Thank you for all of the prayers and well wishes. I feel like we are truly on the best side of this journey.
Happy Wednesday!!
TTFN~
Wednesday, August 27, 2014
Sunday, August 24, 2014
When the lost get found......
Tomorrow morning Kaitlynn will start 5th grade (her last year of elementary school), Jackson enters 4th grade and Madelynn will skip in to 1st grade. People ask me all the time, "Aren't you ready for them to go back to school?" My constant answer is, "No, it will be nice for my house to be as clean as when I left for work as when I come home but I will missed the more relaxed environment."
In preparation for the return to school, I started in one room moving through the house and just went to town decluttering again. I have an over flowing recycle and trash containers for pick up tomorrow, one black trash bag and box full of recycling and I found a few missing items. One item in particular.
I lost a disk from my camera that had a few months worth photos on it. I thought I had lost it in the deep abyss know as my house but it has resurfaced. I thought I would share a few of the lost photos I thought I would never recover.
So glad I found this disk.........
TTFN~
In preparation for the return to school, I started in one room moving through the house and just went to town decluttering again. I have an over flowing recycle and trash containers for pick up tomorrow, one black trash bag and box full of recycling and I found a few missing items. One item in particular.
I lost a disk from my camera that had a few months worth photos on it. I thought I had lost it in the deep abyss know as my house but it has resurfaced. I thought I would share a few of the lost photos I thought I would never recover.
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| Jackson getting ready for his first basketball game of the 2013 season. |
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| "Bob" our oak tree. He has provided many great summer days. Take note this is January and the kids are wearing shorts. |
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| For Christmas one year the kids received a soccer goal. One weekend in January we put it together. |
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| Don't freak out Dad....Can you guess who took this picture. Yes I am wearing Tigger PJ's. LOL!!! |
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| The completed soccer goal. |
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| "Bob" out oak tree will not lose his leaves until January. Madelynn decided to play in the leaves I had raked up. What a cutie!! So glad I found this disk. |
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| Kaitlynn and Jackson taking a break from breaking in the new soccer goal. This was also in January, another reason why I LOVE the south. |
TTFN~
Friday, August 15, 2014
Meeting "The Other Side of 615"........
Every May for the past five years we have travelled to Blacksburg, SC for Camp LUCK Family Camp. This past May was no exception, this year we took Phil's sister Jacquie and her husband Tony with us. Each family is assigned a Camp counselor just like when you went to camp as a kid. However they did not stay in our cabin, but they did have meals with us, helped us if we had questions and just made our camp experience fun.
Our Family Camp counselor was Amanda and Madelynn just loved her instantly. At meals I did not exist, Madelynn was only interested in eating if she could sit with Amanda. It was very cute to watch her weasel her way right next to Amanda for each meal. When Sunday came Amanda had to leave before camp was over and would miss our last meal together. Madelynn was heartbroken. It was pitiful.
You see Amanda had a long ride ahead of her. She is an up and coming songwriter from Nashville and one half of the group Aberdeen Green. She was sad to depart but did not leave us empty handed. She gave us a paper bag CD with a sample of her songs she wrote/co-wrote with Carley, the other half of Aberdeen Green. Through facebook I have kept in touch with Amanda and discovered she was going on tour for the summer and part of the Fall.
Snooping through the tour schedule Aberdeen Green would be close to us near Madelynn's birthday. As luck would have it we were able to surprise Madelynn and see Aberdeen Green, Alexa, and Jessica Cayne during their "The Other Side of 615" tour. So Saturday August 9th we, along with Phil's sister and her husband, travelled to Southern Pines, NC and found Amanda and all of her tour mates. I had no idea what we were in for but they did not disappoint.
Aberdeen Green gave us a private concert, in honor of Madelynn. They recently completed and released their first record entitled, "The Oak Tree". They gave Madelynn a signed copy for her Birthday and sang Happy Birthday both during the private concert and when they performed live during the public show. We met Alexa and Jessica and were able to listen to them sing live as well. The whole night was pretty amazing and we could not have asked for a better evening for Madelynn. Every time I looked over at her she was grinning from ear to ear. As her mom it melted my heart to see Madelynn exuding so much joy.
Amanda gave up a weekend to volunteer at Camp LUCK Family Camp, she has been on tour for about two months and stopped everything to help celebrate Madelynn's birthday and even spent two days at Camp LUCK Kid's Camp this week. I admire her for staying grounded and remembering what is important and focusing on what is real. I was truly touched how kind she and her band mate, Carley, and her tour mates, Alexa and Jessica, were. They treated us like old friends, hugged us like we were family they had been missing and treated Madelynn like a princess.
Thank you, Amanda, Carley, Alexa and Jessica, from the bottom of our hearts for making Madelynn's birthday a night she will not soon forget; even if she did fall asleep before the whole night was over (LOL!).
TTFN~
Our Family Camp counselor was Amanda and Madelynn just loved her instantly. At meals I did not exist, Madelynn was only interested in eating if she could sit with Amanda. It was very cute to watch her weasel her way right next to Amanda for each meal. When Sunday came Amanda had to leave before camp was over and would miss our last meal together. Madelynn was heartbroken. It was pitiful.
You see Amanda had a long ride ahead of her. She is an up and coming songwriter from Nashville and one half of the group Aberdeen Green. She was sad to depart but did not leave us empty handed. She gave us a paper bag CD with a sample of her songs she wrote/co-wrote with Carley, the other half of Aberdeen Green. Through facebook I have kept in touch with Amanda and discovered she was going on tour for the summer and part of the Fall.
Snooping through the tour schedule Aberdeen Green would be close to us near Madelynn's birthday. As luck would have it we were able to surprise Madelynn and see Aberdeen Green, Alexa, and Jessica Cayne during their "The Other Side of 615" tour. So Saturday August 9th we, along with Phil's sister and her husband, travelled to Southern Pines, NC and found Amanda and all of her tour mates. I had no idea what we were in for but they did not disappoint.
Aberdeen Green gave us a private concert, in honor of Madelynn. They recently completed and released their first record entitled, "The Oak Tree". They gave Madelynn a signed copy for her Birthday and sang Happy Birthday both during the private concert and when they performed live during the public show. We met Alexa and Jessica and were able to listen to them sing live as well. The whole night was pretty amazing and we could not have asked for a better evening for Madelynn. Every time I looked over at her she was grinning from ear to ear. As her mom it melted my heart to see Madelynn exuding so much joy.
Thank you, Amanda, Carley, Alexa and Jessica, from the bottom of our hearts for making Madelynn's birthday a night she will not soon forget; even if she did fall asleep before the whole night was over (LOL!).
TTFN~
Tuesday, August 12, 2014
Experiencing the New River........
This has been a very busy summer. At least once a week someone asks me, "Where are you going now?"
This summer did not start out the way we had planned but we adapted and moved on. A few weeks ago was our last official week of camps. I could have taken a week off just to recover from that. Instead my friend Stephanie (The Groupon Junky, LOL!!) and Phil bought passes to tube down a NC mountain. At least that is all they told me when the purchase was made.
However that isn't quite what it was. It was all day passes to get in a tube and float down the New River in Boone, NC. I had no idea what we were in for. I have to say I was a little nervous, I didn't know how safe this would be for the kids. I had visions of spending all my time keeping them safe instead of enjoying myself. Again I was very, very wrong.
The weather was exquisite, the water was calm and shallow, it was the PERFECT environment for kids. If I tried to plan this day myself it would have been an epic fail. Instead we were given a gift beyond measure.
This summer did not start out the way we had planned but we adapted and moved on. A few weeks ago was our last official week of camps. I could have taken a week off just to recover from that. Instead my friend Stephanie (The Groupon Junky, LOL!!) and Phil bought passes to tube down a NC mountain. At least that is all they told me when the purchase was made.
However that isn't quite what it was. It was all day passes to get in a tube and float down the New River in Boone, NC. I had no idea what we were in for. I have to say I was a little nervous, I didn't know how safe this would be for the kids. I had visions of spending all my time keeping them safe instead of enjoying myself. Again I was very, very wrong.
The weather was exquisite, the water was calm and shallow, it was the PERFECT environment for kids. If I tried to plan this day myself it would have been an epic fail. Instead we were given a gift beyond measure.
Once we got in the van that carried us further up the mountain and we entered the water I put the camera away. I was too afraid to take it down the river. Hindsight is always 20/20, I wish I had taken it. The water was calm but yet flowed just fast enough to enjoy every curve of the stream. The rest of the world did not matter, no cell phone, no one demanding one second of my time it was true perfection. I could hear the kids giggling and laughing, every time I looked over at Phil he looked like her was sleeping down the river; it was truly an awesome day.
When Phil and I chose where we wanted to live it appeared to be far enough away from the hustle and bustle of the city. Today that it not true since we used to be listed as the fasted growing county in the US. Now I can walk to the grocery store, hardware store and the gas station. Going up to Boone we were so far up in the mountains my phone stopped searching for signal because there simply was no signal, land line required as I liked to call it. The farms and the land were in their original, honest form, the way God made it. Needless to say I can't wait to go back.
Thank you again to Stephanie for being the Groupon Junkie and to Phil for always trying to find us a new adventure and making memories the kids will not soon forget. If you ever get the chance to try something new head up to Boone, NC until your phone can't even search for signal, take a deep breath and just savor the beauty in front of you.
TTFN~
Wednesday, August 6, 2014
Happy 6th Birthday Madelynn!!
Six years ago today I checked myself into the hospital hoping Madelynn would be born sometime today. Fifteen hours later Madelynn joined us, we had no idea what surprises of her own she came with.
Madelynn will always have heart disease and she will always be a CHD baby. For a long time that is what defined her, that was our whole world. As Madelynn has grown, life has been less about being a heart kid and more about being a kid. Life used to be all about her medications, her specialists, what she couldn't do and what she had to do.
Life is much different today. My heart warrior still exists but she exists in a new persona. She is a princess, a soccer player, a computer gamer or a basketball player. She wants to try everything and her world has no limits and she has NO FEAR!!
This is the ultimate goal every parent wants but heart families yearn for normalcy or their idea of it everyday.
Madelynn and her journey has changed us forever. She gave us a new vision of what we wanted out of this life. As hard as it is, I love helping other newly diagnosed families. Whether it is as simple as telling them all of this is "normal" for a heart kid, giving them a much needed hug or reminding them they have the power to be their child's advocate. Some families I meet once, some families I have known for years. Without Madelynn I would have never understood this empowerment or known how important it is to share with other heart families.
Don't get me wrong Madelynn still has her struggles. She still weighs less than 40 lbs, food is still the enemy, she still has problems with her lungs and her heart still has to be checked for the rest of her life. They are just that struggles,we don't let it define her. At least we try not to.
The other day Phil was looking at the soccer schedule and the age groups. He told me there is no group for Madelynn. I asked him if he was sure about that. He told me they only have a U7 group. I laughed and said, "Phil your daughter is going to be SIX she belongs in the U7 group." As surprised as he was by my answer I was just as surprised as it came out of my mouth.
As Madelynn celebrates each birthday my heart is filled with more and more joy. She beat some very grave odds. She reminds me daily that everyday is worth fighting for. God had a beautiful master plan when there was no earthly reason she should have been born. Madelynn changed everything for us and we are better for it.
Happy 6th Birthday Madelynn!! Thank you for making me a better mom and person. Thank you for being that shining light that sometimes is just what people need. Thank you for reminding me everyday there is always something to smile about.
Love, Mama
TTFN~
Madelynn will always have heart disease and she will always be a CHD baby. For a long time that is what defined her, that was our whole world. As Madelynn has grown, life has been less about being a heart kid and more about being a kid. Life used to be all about her medications, her specialists, what she couldn't do and what she had to do.
Life is much different today. My heart warrior still exists but she exists in a new persona. She is a princess, a soccer player, a computer gamer or a basketball player. She wants to try everything and her world has no limits and she has NO FEAR!!
This is the ultimate goal every parent wants but heart families yearn for normalcy or their idea of it everyday.
Madelynn and her journey has changed us forever. She gave us a new vision of what we wanted out of this life. As hard as it is, I love helping other newly diagnosed families. Whether it is as simple as telling them all of this is "normal" for a heart kid, giving them a much needed hug or reminding them they have the power to be their child's advocate. Some families I meet once, some families I have known for years. Without Madelynn I would have never understood this empowerment or known how important it is to share with other heart families.
Don't get me wrong Madelynn still has her struggles. She still weighs less than 40 lbs, food is still the enemy, she still has problems with her lungs and her heart still has to be checked for the rest of her life. They are just that struggles,we don't let it define her. At least we try not to.
The other day Phil was looking at the soccer schedule and the age groups. He told me there is no group for Madelynn. I asked him if he was sure about that. He told me they only have a U7 group. I laughed and said, "Phil your daughter is going to be SIX she belongs in the U7 group." As surprised as he was by my answer I was just as surprised as it came out of my mouth.
As Madelynn celebrates each birthday my heart is filled with more and more joy. She beat some very grave odds. She reminds me daily that everyday is worth fighting for. God had a beautiful master plan when there was no earthly reason she should have been born. Madelynn changed everything for us and we are better for it.
Happy 6th Birthday Madelynn!! Thank you for making me a better mom and person. Thank you for being that shining light that sometimes is just what people need. Thank you for reminding me everyday there is always something to smile about.
Love, Mama
TTFN~
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