As most of you are wiping the sleep from your face this morning I will be lining up at the staring line for the annual Cupid Cup in 25 degrees. I have a personal goal this year to complete 5 5k races in 2016 and this will be my first one of the year. This will be the third time I have completed this race and the second year in a row I am stupid enough to run in below freezing temperatures. I have know idea why I would put myself through this torture,
Oh wait yes I do.................
A 5K is 3.2 miles.
Today my first mile will be for all of those mothers, fathers, brothers sisters, aunts, uncles that utilize cardiac rehab after a cardiac event. My father suffered a heart attack a few years ago. He takes care of himself and was able to access cardiac rehab in his recovery. It is a vital part of recovery.
When I start my second mile it will be for all of the congenital heart defect warriors like my Madelynn. All of those children who have endured a most unimaginable start in life that includes open heart surgery many (times more than one), weeks and months in the hospital, endless doctor visits and other tests that are not part of growing goals of a new born. If they can fight through this journey I can fight through my second mile.
Finally when I reach the start of my third mile it will be the most grueling of the day. I will be tired, cold, my lungs will hurt and I will want to give up. I can't, I won't. This mile is for the all of the heart warriors who have earned their wings, all of them too soon. They fought until the very end I can continue to put one foot in front of the other and finish.
Oh but wait their will still be .2 miles left. It hardly seems worth mentioning .2 miles but that will be for me. I am the daughter of a cardiac rehab patient, I am the mother of a CHD warrior and survivor, I am the friend to some of those mothers who left the hospital empty handed. I have traveled this exhausting journey and today I run for all of those that can't.
Happy #heartmonth #chdweek hugs to Madelynn, Jessica, Brandon, Evan, Amanda, and all the other #CampLUCK warriors,
Saturday, February 13, 2016
Thursday, February 11, 2016
God has big plans for her..............
Yesterday, I posted this picture on my social media sites. For homework due Friday Madelynn needed to build a time line about her life. I had no idea the power of these pictures when I printed them until we stated to build Madelynn's timeline.
Picture #1 - Madelynn's Birth - A few days after Madelynn's birth we brought her home to begin the adventure of raising 3 kids 4 and under. I sometimes still call it God's sick joke. This picture was from her first bath. Every mother on this planet has a picture just like it. However very few mother's treasure it like I do. It is the only picture I have of her perfect chest before she earned her zipper. If I ever lost this digital copy I would be crushed.
Picture #2 - Open Heart Surgery - 10 weeks almost to the day I surrendered Madelynn to a man who promised me he would give her back. Over a 20 hour period I learned that there was no medical reason Madelynn should be alive, she will fight for every second of her life, a 7 hour surgery seems like days and the shock and awe that rushes over your body when you see your child for the first time after open heart surgery is nothing you will be prepared for. There are no words you can pen to paper that will properly equate to what you see. This picture is close to what I saw. Where I found the strength to not buckle my knees to the floor, only God can answer that.
Picture #3 - Baptism - Before I had ever heard of a CHD I had planned Madelynn's baptism. It was to be a grand family event and I was thrilled my parents, siblings and their families would be here for it. However, I postponed it. I called the church and explained what had happened. The very sweet lady on the other end offered to have the priest come to the hospital to baptize Madelynn. I quickly said No. I told my family I wanted her baptized like my other children.
What very few people know is that I was afraid to have her baptized at the hospital. I felt if I had her baptized I was giving permission for God to take her home with Him. I was not ok with that. When baptism day finally came she was six weeks away from her first birthday. As we were standing around in the hallway of the church it hit me. We had made it to a place where Madelynn was going to make it. She was still working out a few kinks but I felt like we made it. At that moment, tears just started rolling down my face and I could not make them stop. It was as if EVERY tear I held in for all of those months had permission to flow. It was an incredibly freeing moment.
Picture #4 - 1st Annual Camp LUCK Family Camp - Throughout our heart journey I have met some pretty stellar heart families. Some of their stories made ours seem like standard operating procedure. We learned what our new normal was and made some amazing new friends. Camp LUCK (Lucky Unlimted Cardiac Kids) supports families like ours in lots of different ways (www.campluck.com). One of those adventures is to go the Camp Cherokee for the weekend as a family, live in a cabin, "unzip" from the chaos of the outside world and live in that moment right there. Madelynn has been to every one. This picture is her at the first one in 2010 at 21 months old. When I see this picture it gives me permission to exhale.
Picture #5 - First day of Kindergarten - I cried all the way to work that day. We had reached a milestone some days I thought were impossible. When I was making weekly visit to the pediatricians office, monthly visits to the pediatric cardiologist, monthly visits to the pediatric pulmunologist, weekly physical therapy, multiple ER visits kindergarten was the furthest thing from my mind. The peak of the mountain we were climbing was in view and I was finally go to see what was on the other side. We were lucky enough to reach a point that an unacceptable amount of heart warriors never see.
Picture #6 - 1st Soccer Game - Madelynn's Heart and Lung doctors both cleared her to play soccer. At different appointments they both said almost the same thing verbatim. The only way to know if she can do it is to let her try. Madelynn suffered a collapsed lung and paralysis in her diaphragm after her OHS. At her last x-ray her diaphragm still did not contracted completely as it should. But at her last breathing test she scored better than the average normal person. To see her in a soccer uniform, running with the boys, scoring goals my heart is overflowing. Not only did God and the doctors give her back to me it was done 10 fold.
Picture #7 and #8 - Remember when I told you we had reached the peak of the mountain and I wanted to see what was on the other side. This is the beginning of the other side. Dairy Queen had their Miracle Treat Day. My friend at the Hospital Foundation said tell me that you went and I will have prizes for the kids. So I emailed her a photo of Madelynn eating her blizzard. She was so thrilled she asked if they could take more pictures of Madelynn . One of those photos was to go with a small write up in in the Hospital Foundation Magazine. I asked for a few copies to share with my family. To my speechless astonishment she was put on the cover. I was so excited I was shaking.
Some time after that I was asked if that photo could be entered in the Dairy Queen Children's Miracle Network photo contest. She won!! She was on all the Dairy Queen handouts for the Children's Miracle Network for the second quarter of the year. These were the posters that were hung in all the stores across the country. Friends from all over sent us photos standing next to the photo of Madelynn. We were traveling back from DC and stopped at a truck stop that had a Dairy Queen attached. Low and Behold there was Madelynn right in the center aisle poster size. It was the first time I had seen one and an affirmation that we were on the other side.
For Madelynn to have to complete this assignment for CHD Awareness week was God's plan all along. It is just another reminder God has big plans for.
TTFN~
Tuesday, February 9, 2016
Hope, Normal and a little bit of Brilliant Silence
We are in the second week of Heart Month and the beginning of Congenital Heart Defect Awareness week. I could tell you more about our journey. Sometimes the journey stands still in a brilliant silence that can not be photographed, drawn or even described very well. But I am going to try.......
The last few years have been a whirlwind. My 12 year old daughter has shown she has an amazing heart for sports. She is quiet and observant, the next thing you know she pounces and you are speechless. You are in awe at the gift that suddenly rises to the top. She has been on the A and AB honor roll, she plays the clarinet, soccer and basketball. The doors that have been opened for her leaves me silenced on a weekly basis. I demand the most from her and she delivers.
Last Spring Kaitlynn was in the goalie box in one of her most challenging matches to date. She is one of the smallest goalies in the league. But at that moment when the ball is sailing into the box she caught it. For a few seconds, before the sidelines erupted into cheers, there was a brilliant silence.
Throughout this journey I have a son who is a warrior, with a gentle soul and will always defend the weak. On the days he frustrates me the most and I want to just light my hair on fire, he stops me dead in my tracks. He is honest, almost to a fault, and would give the shirt off of his back if I would let him. He has the most amazing talent in Math. The way his brain works he can give you the answer before most are done writing it down. About the time I want to give in he reminds me why I shouldn't.
This season in basketball my son has truly struggled. Sometimes it was almost painful to watch and sometimes it included tears. I really felt like this was the end of basketball for him this year. In the last regular season game, it was the first minutes of the game Jackson was standing outside the rainbow, received a quick pass and sailed the ball up and drained a 3. For those few seconds, brilliant silence. Then the cheers.
The biggest surprise of this journey we were catapulted into a world that included CHD, Coarctation of the Aorta, extended repair, holes in the heart, possible months in the hospital, magazine cover, poster child, CHD Awareness video, Featured story on Social Media, Fundraiser video the opportunities have left us in awe and sometimes dumbfounded. Some days and weeks have left us physically exhausted either because we are fighting for her life or we are giving back everything we can because we are winning the fight against CHD.
The best part about Madelynn's story is the hope we can share with other families. Let's be honest in the world of CHD's some days hope is the only thing to cling too. We long for a normal day. We would barter for one 24 hour period that did not include a single hint of a CHD. The other day we were having a NORMAL day. We were tired and Madelynn asked if she could snuggle with me. What parent would ever turn that away? As we were laying in our brilliant silence, I realized my hand was laying on Madelynn's chest and her heart was beating in my hand. At that moment my world stood eerily still. I didn't hear anything, see anything nothing matter in that amazing, breathless moment all I could feel was my daughters heart in my hand.
As the outside world came back into focus, I was reminded of God's perfect timing that put every single detail in just the right place to save her life. I am reminded more times than not by others' journey that she is here for a reason and I must walk through every open door. You just never know who is on the other side to share your spectacular silence with.
About the time I could become very comfortable in a normal life that does not include CHD, I am whisked through a door reminding me: Hope is your purpose. You were never created for normal.
As we celebrate Congenital Heart Defect Awareness Week (kind of an oxymoron), my HOPE is that you find a little bit of NORMAL and can celebrate your BRILLIANT SILENCE.
TTFN~
The last few years have been a whirlwind. My 12 year old daughter has shown she has an amazing heart for sports. She is quiet and observant, the next thing you know she pounces and you are speechless. You are in awe at the gift that suddenly rises to the top. She has been on the A and AB honor roll, she plays the clarinet, soccer and basketball. The doors that have been opened for her leaves me silenced on a weekly basis. I demand the most from her and she delivers.
Last Spring Kaitlynn was in the goalie box in one of her most challenging matches to date. She is one of the smallest goalies in the league. But at that moment when the ball is sailing into the box she caught it. For a few seconds, before the sidelines erupted into cheers, there was a brilliant silence.
Throughout this journey I have a son who is a warrior, with a gentle soul and will always defend the weak. On the days he frustrates me the most and I want to just light my hair on fire, he stops me dead in my tracks. He is honest, almost to a fault, and would give the shirt off of his back if I would let him. He has the most amazing talent in Math. The way his brain works he can give you the answer before most are done writing it down. About the time I want to give in he reminds me why I shouldn't.
This season in basketball my son has truly struggled. Sometimes it was almost painful to watch and sometimes it included tears. I really felt like this was the end of basketball for him this year. In the last regular season game, it was the first minutes of the game Jackson was standing outside the rainbow, received a quick pass and sailed the ball up and drained a 3. For those few seconds, brilliant silence. Then the cheers.
The biggest surprise of this journey we were catapulted into a world that included CHD, Coarctation of the Aorta, extended repair, holes in the heart, possible months in the hospital, magazine cover, poster child, CHD Awareness video, Featured story on Social Media, Fundraiser video the opportunities have left us in awe and sometimes dumbfounded. Some days and weeks have left us physically exhausted either because we are fighting for her life or we are giving back everything we can because we are winning the fight against CHD.
The best part about Madelynn's story is the hope we can share with other families. Let's be honest in the world of CHD's some days hope is the only thing to cling too. We long for a normal day. We would barter for one 24 hour period that did not include a single hint of a CHD. The other day we were having a NORMAL day. We were tired and Madelynn asked if she could snuggle with me. What parent would ever turn that away? As we were laying in our brilliant silence, I realized my hand was laying on Madelynn's chest and her heart was beating in my hand. At that moment my world stood eerily still. I didn't hear anything, see anything nothing matter in that amazing, breathless moment all I could feel was my daughters heart in my hand.
As the outside world came back into focus, I was reminded of God's perfect timing that put every single detail in just the right place to save her life. I am reminded more times than not by others' journey that she is here for a reason and I must walk through every open door. You just never know who is on the other side to share your spectacular silence with.
About the time I could become very comfortable in a normal life that does not include CHD, I am whisked through a door reminding me: Hope is your purpose. You were never created for normal.
As we celebrate Congenital Heart Defect Awareness Week (kind of an oxymoron), my HOPE is that you find a little bit of NORMAL and can celebrate your BRILLIANT SILENCE.
TTFN~
Wednesday, February 3, 2016
If we're honest
If we are honest......these are four very scary words.
If we're being honest I used to be angry and not just a little angry about Madelynn's journey. I had a boy and a girl and my life was exactly what I wanted, at least I thought so. Why did I need a third child? Why was it so important Madelynn be born??
If we're being honest my life was never close to being complete until Madelynn was born. The laughs, the utter joys, that gleaming smile, those big brown eyes. God has big plans for us and we have just scratched the surface of this journey. Every time I think we are just going to have an average family of five and Madelynn's history is a memory, I am reminded I need to continue to share our journey.
If we're being honest some of my most treasured friends are Heart Moms who have lived in the trenches with me. Other Heart Moms get it, they speak my language and in some cases no words need to be spoken. If I tell them Madelynn's heart check up is next week, nothing else needs to be explained. However, if I were speaking to my childhood friend I would have to tell her what happened, surgery, recovery, additional trips to the hospital and other specialists, therapy. It can be incredibly overwhelming and in some cases very off putting. This scenario is no ones fault but it makes life complicated. Some days I miss my old friends.
If we're being honest my life has done a complete 180. If you told me back in 1995 when I moved to Charlotte the events that would occur I would have tried to run away. However as part of God's plan everything was set perfectly in place. Every single person we needed to cross paths with was set in motion. There is no medical reason Madelynn should be alive today. But she is because of the beautifully orchestrated plan to bring her into this life. Sometimes processing it and accepting it can be overwhelming and brings me to tears.
If we're being honest not enough people know about Congenital Heart Defects (CHD).
If we're being honest too many children aren't making it to their first birthday because of CHD.
If we're being honest more research needs to be done to save these babies and thus more money needs to be available.
If we're being honest more children die from CHD every year than all childhood cancers combined.
I know everyday we were extremely fortunate that Madelynn's story started the way it did and she is still here with us. I have vowed not to waste it and will continue to share it.
TTFN~
If we're being honest I used to be angry and not just a little angry about Madelynn's journey. I had a boy and a girl and my life was exactly what I wanted, at least I thought so. Why did I need a third child? Why was it so important Madelynn be born??
If we're being honest my life was never close to being complete until Madelynn was born. The laughs, the utter joys, that gleaming smile, those big brown eyes. God has big plans for us and we have just scratched the surface of this journey. Every time I think we are just going to have an average family of five and Madelynn's history is a memory, I am reminded I need to continue to share our journey.
If we're being honest some of my most treasured friends are Heart Moms who have lived in the trenches with me. Other Heart Moms get it, they speak my language and in some cases no words need to be spoken. If I tell them Madelynn's heart check up is next week, nothing else needs to be explained. However, if I were speaking to my childhood friend I would have to tell her what happened, surgery, recovery, additional trips to the hospital and other specialists, therapy. It can be incredibly overwhelming and in some cases very off putting. This scenario is no ones fault but it makes life complicated. Some days I miss my old friends.
If we're being honest my life has done a complete 180. If you told me back in 1995 when I moved to Charlotte the events that would occur I would have tried to run away. However as part of God's plan everything was set perfectly in place. Every single person we needed to cross paths with was set in motion. There is no medical reason Madelynn should be alive today. But she is because of the beautifully orchestrated plan to bring her into this life. Sometimes processing it and accepting it can be overwhelming and brings me to tears.
If we're being honest not enough people know about Congenital Heart Defects (CHD).
If we're being honest too many children aren't making it to their first birthday because of CHD.
If we're being honest more research needs to be done to save these babies and thus more money needs to be available.
If we're being honest more children die from CHD every year than all childhood cancers combined.
I know everyday we were extremely fortunate that Madelynn's story started the way it did and she is still here with us. I have vowed not to waste it and will continue to share it.
TTFN~
Tuesday, February 2, 2016
Choices
Being the parent of a child with a Congenital Heart Defect is definitely not a club I would ever want to join. I have slept on hospital couches, I have fallen asleep to beeping machines, I have eaten Oreo's at 2 am because I could not sleep. I had to learn what a Coarctation of the Aorta with complications was. I learned in order to save my daughter's life I had to agree to the following:
-To stop my daughter's heart and hook her up to the heart lung machine
-Allow the surgeon to cut out a portion of her Aorta and splice the remaining parts back together
-Then hope her heart would restart when they were finished
-Did I mention that her heart was the size of a Walnut?
-Did I mention they had to break her rib cage to complete this procedure?
Once you join this "Club" you have to make choices and force your child to make choices that they do not understand or want. So they aren't really choices this is the problem and this is what the surgeon has to do so your child can live!
As our journey continued my child knew she was different and she assumed constant visits to doctors and specialists were common place. She even calls Levine Children's Hospital "Her Hospital". We know almost all the staff at the Pediatricians office by first name. One day her Cardiologist took time out of his busy schedule to watch her play soccer. This is certainly not the life I envisioned for my child.
If I were to share anything with other parents it would be to allow your children to make choices and give them their power back. They can't refuse to go to the cath lab, get a blood draw, lay perfectly still for an echo or refuse the doctor to do his job. But as the parent can give them other choices. What do you want to wear to the doctor appointment? Where do you want go after the appointment? What do you want to watch while the tech completes your echo? Most of these decisions mean nothing to most people. To a child who has to suffer through these procedures, those simple choices mean the world to them.
These decisions that consume a heart families everyday life mean nothing to those unaffected and unaware. Through the month of February I want to make you aware. Most unaffected will go about everyday life March 1st as if nothing has happened. For us Congenital Heart Defects make us aware March, April, May, June, July, August, September, October, November, December and January too. Simple put it never ends it is always there and we are always aware.
#areyouaware
TTFN~
-To stop my daughter's heart and hook her up to the heart lung machine
-Allow the surgeon to cut out a portion of her Aorta and splice the remaining parts back together
-Then hope her heart would restart when they were finished
-Did I mention that her heart was the size of a Walnut?
-Did I mention they had to break her rib cage to complete this procedure?
Once you join this "Club" you have to make choices and force your child to make choices that they do not understand or want. So they aren't really choices this is the problem and this is what the surgeon has to do so your child can live!
As our journey continued my child knew she was different and she assumed constant visits to doctors and specialists were common place. She even calls Levine Children's Hospital "Her Hospital". We know almost all the staff at the Pediatricians office by first name. One day her Cardiologist took time out of his busy schedule to watch her play soccer. This is certainly not the life I envisioned for my child.
If I were to share anything with other parents it would be to allow your children to make choices and give them their power back. They can't refuse to go to the cath lab, get a blood draw, lay perfectly still for an echo or refuse the doctor to do his job. But as the parent can give them other choices. What do you want to wear to the doctor appointment? Where do you want go after the appointment? What do you want to watch while the tech completes your echo? Most of these decisions mean nothing to most people. To a child who has to suffer through these procedures, those simple choices mean the world to them.
These decisions that consume a heart families everyday life mean nothing to those unaffected and unaware. Through the month of February I want to make you aware. Most unaffected will go about everyday life March 1st as if nothing has happened. For us Congenital Heart Defects make us aware March, April, May, June, July, August, September, October, November, December and January too. Simple put it never ends it is always there and we are always aware.
#areyouaware
TTFN~
Monday, February 1, 2016
I will not apologize......#areyouaware
Before October 2008 I had never heard of Congenital Heart Defects (CHD). I was raising the family next door and life was like any other American family with 2.5 kids. Then everything changed we became a statistic I had never heard of before, we were 1 in 100. Did you know every year 1 out every 100 babies born has a CHD? Did you know every year 10,000 babies are born with a CHD. Did you know more children die from CHD than all childhood cancers combined??
If you didn't know don't worry most people don't. But for me that is not ok. I do not accept that there is not enough money for research to save these babies. I do not accept any parent should have to bury their child from this disease. So I will share today, tomorrow and the day after that, the week, months and years after that. I want everyone to be aware about this disease. There is NO cure for this disease just surgeries to prolong life.
I will not apologize for sharing or over sharing what I know about CHD. I did not choose to be a member of this statistic but I am. My daughter did not choose to have open heart surgery to save her life but she did. She is one of the lucky ones to be winning her fight against CHD, but she is not cured.
February is Congenital Heart Defect Awareness Month and my hope is to make you aware. If you get annoyed because you feel like I am stuffing it down your throat I won't apologize for that. If it wasn't for someone becoming aware my daughter would have died in 2008 and I wouldn't have deserved that.
So #areyouaware??
TTFN~
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