Today I am thankful for the gift of life.
Three years ago, I didn't know if I would see past my 25th birthday.
I didn't know if I would live to see my newborn daughter grow up.
I was afraid, she would never know me.
I was wondering if I would ever get the call.
I remember vividly, holding onto the hope of life.
Praying each and every day for my donor and family.
Playing a lot of scrabble games in between.
Looking out the hospital window.
Praying, and hoping, and wishing...
When Mr. Lovebug, wrote this:
Today marks exactly two months since I last...
Slept in the same bed with you.
Rode in the same car with you.
Was your primary caregiver (in action).
Ate a real meal with you.
Tickled you.
Bought a McDonald's breakfast for you.
Was really alone with you.
Ate your homecookin'.
Got your meds ready for you.
Danced with you.
Really kissed you good.
I've spent more time with you in the past two months that in forever, and I wouldn't trade it for the world.
But still, I miss you like crazy.
Life: I never want to take it for granted. I am so grateful for my donor's gift of it.
Love: I want to lavish in it. I want to consistently remind myself of where we were, and where we are. I want celebrate it, everyday!
28.2.11
26.2.11
My Weakness
This is my weakness...
Every year around this time, when I go into the pharmacy to collect my monthly med supply, I see this. It brings pure delight and happiness to my soul.
Thank you Cadberry brothers! I'll always be grateful to you for this invention of confectionary goodness.
Can I get a witness?
24.2.11
Check these out
Great article on Foster Care: I couldn't say it better myself. Thanks Kristy for sharing your thoughts and family with other children.
Excited to read this news about Cystic Fibrosis in the NY Times: Thankful for friends and family who have contributed to CFF to make this possible! Here in our small town of approximately 6,000 we have raised over $100,000 for CF research. Making drugs like this come a reality.
Love these lunch and sandwich bags: We are all about ladybugs in our home and sheep (Shaun in particular) too. I love these creative, crafty homemade and adorable bags.
Ladybug and I recently discovered this show: during breathing treatment time. We are delayed in finding cute shows since we don't have cable here in Lovebug Land. We enjoy the catchy tunes and science tidbits. It is something our older foster child enjoys watching with her.
Shout Out: Happy birthday to my daddy! He is the most loving, caring, compassionate, giving dad I could have. I love him so much and appreciate all that he has taught me about life. Looking forward to celebrating with my parents tonight! Ok, that link isn't connected to my dad, but he does share the same name with the iconic rock producer.
Excited to read this news about Cystic Fibrosis in the NY Times: Thankful for friends and family who have contributed to CFF to make this possible! Here in our small town of approximately 6,000 we have raised over $100,000 for CF research. Making drugs like this come a reality.
Love these lunch and sandwich bags: We are all about ladybugs in our home and sheep (Shaun in particular) too. I love these creative, crafty homemade and adorable bags.
Ladybug and I recently discovered this show: during breathing treatment time. We are delayed in finding cute shows since we don't have cable here in Lovebug Land. We enjoy the catchy tunes and science tidbits. It is something our older foster child enjoys watching with her.
Shout Out: Happy birthday to my daddy! He is the most loving, caring, compassionate, giving dad I could have. I love him so much and appreciate all that he has taught me about life. Looking forward to celebrating with my parents tonight! Ok, that link isn't connected to my dad, but he does share the same name with the iconic rock producer.
Lastly, I'll leave you with this cute picture of our fat tabby cat named, Ralphie. For those who may be wondering, the mouse is not real.
15.2.11
Who Wears Glasses?
Ladybug a I love to read together.She began wearing glasses at one and a half years of age. As soon as she began wearing them, I decided to look on amazon for good reads on the subject of glasses.
Recently, I came across this book at the school's book fair and bought it right away. It is all about glasses and is perfect for her age level. I love the illustrations and it is made for Pre-K to Kindergarten readers. It is a favorite of ours to read.
Who Wears Glasses?
By Ana Galan
Illustrated by Seb Burnett
12.2.11
8.2.11
Duke vs. UNC {Medical}
Dear Duke and UNC:
I love both of your facilities. You are the best in North Carolina. You are the best in this country. You may be the best in the world. I think you each should teach one another some of your strengths. I think you should share what you learned from your weaknesses. Kind of like with your sporting teams. "You got to give a little, take a little, that's how you live a little..."
A few simple measures I would love to see you learn from one another:
Medical websites
Duke:
Great website and navigation tool. Love the section on finding a doctor and their listed information. Very helpful. The healthview tool is phenomenal and so informative. Especially for a pulmonary/transplant/lymphoma/diabetic/ent/gi issues patient with a daughter who sees a cardiologist/pulmonologist/special infant care/entopthamologist/neurodevelopmentalist. It allows me to check my appointments, schedule my appointments, view my test results and so much more. Whoever came up with this system, brilliant. Now please teach UNC how to get one started. Excuse me UNC if you have one already. I have tried searching for one, and have yet to find it.
Medical Facility
UNC: Beautiful and very large. The indoors really impress me with their cancer patient awareness artwork/photography. I really like the personal aspect of connecting the hospital with patients and care. Seeing these as a survivor of PTLD, was very comforting and encouraging. I wish the hospitals could share stories and faces of patients like this in the hospital more often. I would love this type of artwork to be displayed at Duke.
Parking
Duke and UNC: Where does the money for parking go? Why are you charging patients money to park when they already have medical bills, co pays, traveling, time off, etc. being taking out of their pocket? I am sure there is a good reason. I really see a need for cheaper parking for chronic care patients and their families. Actually, why can't it all just be free?
To ALL Surgeons, Doctors, Nurses, Therapist, Phlebotomists, Housekeeping:
"When you are speaking to your team after a game, never talk about the kid who was the star of the game. Talk about what your other players did to help the team win. Be sure to spread the wealth... Then have individual meetings with one to three players to praise and reinforce. Make sure you touch them." -- Mike Krzyzewski
“I think leadership is never singular. In a good organization, it’s plural.” -- Mike Krzyzewski
Thanks for listening.
What do you love about your medical facility?
6.2.11
Cystic Fibrosis and Death
Living with cystic fibrosis, I have always been keenly aware of my short existence on this earth. I don't know if others with chronic illness like cf have felt this same way, but it seems to be a matter of reality. This does not mean that I am not hopeful. I am a very hopeful person, who prays that my new pair of lungs lasts me a very long time.
The idea of death hit me at a very early age. My parents would be open and honest about all of us being mortal and coming to an end, not knowing when that time would be. Our family's belief in Jesus Christ and his salvation, gave me great hope at the young age of 6. I believed that if I did die, I would eternally be close to Jesus and His followers in heaven. I held onto his promise, that our faith in him would save us from our sin. Romans 10: 9 Because if you confess with your mouth “Jesus is Lord” and in your heart you have faith that God raised him from the dead, you will be saved.
The idea that my cystic fibrosis was life threatening did not penetrate my thoughts until I was older. When I began spending a lot of my time in the hospital. From 8 years of age until I had my transplant, I spent at least two weeks, usually one month each year in the hospital.
It was during these times, that I can remember hearing parents wail as they heard or watched their child die. I remember being in Children's Hospital of Philadelphia. If you walked the hallways, you could look down to the ER entrance. It was in those hallways, usually late at night, that I heard the wails of parents. Sometimes, I would hear them in my unit's hallway. They always gave me the goosebumps. I was often reminded during these stays that life is short.
As I became older and met others with chronic illness' like cystic fibrosis, sickle cell anemia or cancer. I thought to myself, there are a lot of hurting people in this world. The hospital can be a daunting place of reality. For me, it taught me empathy and sympathy for the sick and dying.
I made wonderful friendships during my hospital visits. I have many happy memories of spending time with my new friends, playing jokes on the nurses and doctors, eating non-hospital food late in the evening with the night shift crew, making special bonds with my new friends, and finally feeling the relief of the cf tune-up experience.
Making friends meant losing friends in the cf world. I lost my first friend as a teenager, shortly after she had a transplant. Her name was Gretchen. I will forever remember Gretchen. As I got older, and saw the horrible effects of the disease on my friends, it allowed me to value my life so much more. I never wanted to take my life, family, friends, or illness for granted. I wanted to live my life to the fullest. I wanted to have hopes and dreams that I could fulfill.
During these teenage years, my healthy friends would ask if I was going to die soon. Yes, teens are brutaly honest, and I was asked this quite often. But I was alright with this question and would typically respond with, "Yes, I could die young, but we really don't know how long we each have here on earth." There were some other tragic accidents during my teen years that reminded me of this. For instance, our close friends, the Lawlers, lost their beautiful daughter and three others in a car accident right before our family moved to the coast. This heavily impacted my life in so many ways and once again reminded me that our life if short and only God knows the number of days we have.
I'll stop here and continue on another post, about how my view of death has changed since my teens. Since these years, I have seen many more friends pass. I have come close to death myself, and my view has since changed and matured.
Living with a chronic disease can be a very scary experience. I am so thankful for my friends who have passed away and have encountered death that have taught me so much about life and living. How to live vibrantly, love unconditionally, while enjoying each moment you have. Now that I have had a transplant, it certainly has given me more time here with the ones I love, yet it doesn't exempt me from a short life. I am thankful for my faith in God and hope for the future. I do hope to use the time I have here on earth to live passionately with great purpose.
My friends, I hope that for everyone, whether you are as healthy as they come or taking your last breath!
The idea of death hit me at a very early age. My parents would be open and honest about all of us being mortal and coming to an end, not knowing when that time would be. Our family's belief in Jesus Christ and his salvation, gave me great hope at the young age of 6. I believed that if I did die, I would eternally be close to Jesus and His followers in heaven. I held onto his promise, that our faith in him would save us from our sin. Romans 10: 9 Because if you confess with your mouth “Jesus is Lord” and in your heart you have faith that God raised him from the dead, you will be saved.
The idea that my cystic fibrosis was life threatening did not penetrate my thoughts until I was older. When I began spending a lot of my time in the hospital. From 8 years of age until I had my transplant, I spent at least two weeks, usually one month each year in the hospital.
It was during these times, that I can remember hearing parents wail as they heard or watched their child die. I remember being in Children's Hospital of Philadelphia. If you walked the hallways, you could look down to the ER entrance. It was in those hallways, usually late at night, that I heard the wails of parents. Sometimes, I would hear them in my unit's hallway. They always gave me the goosebumps. I was often reminded during these stays that life is short.
As I became older and met others with chronic illness' like cystic fibrosis, sickle cell anemia or cancer. I thought to myself, there are a lot of hurting people in this world. The hospital can be a daunting place of reality. For me, it taught me empathy and sympathy for the sick and dying.
I made wonderful friendships during my hospital visits. I have many happy memories of spending time with my new friends, playing jokes on the nurses and doctors, eating non-hospital food late in the evening with the night shift crew, making special bonds with my new friends, and finally feeling the relief of the cf tune-up experience.
Making friends meant losing friends in the cf world. I lost my first friend as a teenager, shortly after she had a transplant. Her name was Gretchen. I will forever remember Gretchen. As I got older, and saw the horrible effects of the disease on my friends, it allowed me to value my life so much more. I never wanted to take my life, family, friends, or illness for granted. I wanted to live my life to the fullest. I wanted to have hopes and dreams that I could fulfill.
During these teenage years, my healthy friends would ask if I was going to die soon. Yes, teens are brutaly honest, and I was asked this quite often. But I was alright with this question and would typically respond with, "Yes, I could die young, but we really don't know how long we each have here on earth." There were some other tragic accidents during my teen years that reminded me of this. For instance, our close friends, the Lawlers, lost their beautiful daughter and three others in a car accident right before our family moved to the coast. This heavily impacted my life in so many ways and once again reminded me that our life if short and only God knows the number of days we have.
I'll stop here and continue on another post, about how my view of death has changed since my teens. Since these years, I have seen many more friends pass. I have come close to death myself, and my view has since changed and matured.
Living with a chronic disease can be a very scary experience. I am so thankful for my friends who have passed away and have encountered death that have taught me so much about life and living. How to live vibrantly, love unconditionally, while enjoying each moment you have. Now that I have had a transplant, it certainly has given me more time here with the ones I love, yet it doesn't exempt me from a short life. I am thankful for my faith in God and hope for the future. I do hope to use the time I have here on earth to live passionately with great purpose.
My friends, I hope that for everyone, whether you are as healthy as they come or taking your last breath!
3.2.11
Thankful
There are so many blessings in my life right now.
I randomly found this picture this week. It brings back memories from 3 years ago. It was taken on Valentines' week.
Looking back, I am so thankful:
*I can hold, touch, kiss and speak with my daughter as often as I please. During this week I was able to see Lovebug for the first time. But I was not able to touch her right away. This was very difficult for me. I could not speak to her since I was trached and using the portable ventilator for visits.
*I can eat! I love to eat now, and I partly blame it on the 6 months, I had nothing but enteral tube feedings. Every now and then I had a special treat of applesauce and thickened juice. Eating used to be a battle for my first 25 years of life, now I can't keep food away.
*I can speak & laugh. Like I mentioned before, with a tracheostomy/vent I was not able to speak for quite some time. I missed being able to talk and to just plain laugh out loud. When I did laugh, my machine would beep non-stop.
*I can move. I love being able to go places now. Perhaps, this is also because I was strapped to my bed 24/7 for 5 months. I try to get out of the house with Gwyneth and explore the world each and every day. I feel privileged to do so.
*I can smell. During this time I could not smell. This may have been a blessing, since the hospital environment, especially the ICU is not filled with the most pleasing aromas. Even though my sense of smell is not at its best. I love inhaling my favorite scents: baby bath time, springtime, and foods.
*I can snuggle with my husband every night by his side. When I was hospitalized as a CF patient, Nathan and I would snuggle next to each other at night in the very small single hospital bed. With a ventilator, this makes it impossible, the times he did snuggle, my vent would pop off, and I would stop breathing. This made for a traumatic experience. I am very thankful for each night we spend together snuggling.
*I have new lungs from a donor who made the unselfish decision to donate life. I was waiting and praying every day for the possible donor and his/her family during this time. I hoped every day for a second chance at life. I am so thankful for this person and their decision.
*I can hang out with those I love the most: my family and friends. At the hospital, I felt like I was surrounded by a lot of love. My nurses, doctors, physical, speech therapist ect. all became my new friends. But I missed my church family, close friends and family back home. February marked the sixth month of being away from home. As the saying goes, "there is no place like home."
It was through this experience that I have learned to appreciate and cherish the moments I have. Moments of living, breathing, smelling, tasting and touching that which I love. It is good to be reminded, through pictures like these of where I have been and where I am now. To never forget and always be grateful. For each and every day with the ones we love!
A picture of my tiny little ladybug, three years ago this week.
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