Getting ready to list for transplant has made me feel a strong urge to document more of my daily life with Kaylee. Just in case. I know that sounds morbid and I promise I am hopeful for a future. But if things don't end well she will have a great record of our lives together. And if it does end well then we will both have a great record of our past. Win, win.
My husband has always worked late into the evening on Thursdays. There were other evenings that he works until after Kaylee is in bed, but this is one particular day I don't see him before bed either. When Kaylee was little this made for a long evening especially in the winter when we were trapped inside. Born from this less than ideal situation came my favorite tradition with my little girl.
Every Thursday Kaylee and I made homemade pizza. In the past I used to make dough with her, but admittedly have gotten lazy and started buying store bought dough in recent years. It was a fun dinner because even at a young age Kaylee and I could do it together. She would stand on her little chair next to me, we would both put on aprons and create our own pizza masterpiece. Back when the tradition first started Kaylee insisted that we only call one another "pizza lady" instead of our real names. After the pizza was done she would often be found marching around the house shouting, "Pizza for sale!"
The next part of the tradition actually started as a separate tradition that eventually merged with pizza lady Thursday. When Kaylee was little there were times that I really wanted to watch TV especially on those long winter nights. Unfortunately, I really hate kids cartoons. So I opted to watch cooking shows (we used to watch Pioneer Woman the most) because it never had inappropriate content and we both found it interesting. Kaylee would spend the entire show talking nonstop, "That looks yummy, Can we make that? I like broccoli, ooh I bet that is yummy...." and I essentially couldn't hear a single thing. But it was still better than a kids cartoon.
Fast forward to last year, and we started watching a cooking show (she loves the British Baking Show) and eating pizza on the living room floor. At first, I felt bad eating dinner while watching tv because it was so very different than how we were raised. The dinner table was for eating, not the living room floor. But then I got over it. 6 days a week we sit at the kitchen table and talk over dinner so one day eating in front of the TV can't hurt and has turned into such a fun tradition we both look forward to.
And the last part of the tradition just started last year! When my husband would come home and crawl into bed it would often wake me up and sometimes I would struggle to fall back asleep. When Kaylee got a full sized bed I realized that there was absolutely room for two people especially considering she is still so small. Thursday night I started sleeping in her bed. That way I don't wake up when my husband gets home (around 2 am) and he doesn't wake up to my early alarm. We both sleep better and Kaylee counts down the days every week for her mommy sleep over.
And now Thursdays are known as our pizza lady, baking show, sleepover nights.
Showing posts with label Motherhood. Show all posts
Showing posts with label Motherhood. Show all posts
Saturday, January 26, 2019
Sunday, March 18, 2018
Scars
Spring was starting to appear in all the trees and flowers, and skies filled with birds. But the chill of winter was lingering and as the day started to fade to evening, Kaylee and I snuggled close together under her covers to stay warm.
Kaylee held the book in her hands and she sounded out words and read the pages to me. A new skill learned in kindergarten. As the evening grew later she started to get weary, "Can you read now?"
I took the book from her hands and sleepily started reading where she left off. She listened quietly for a few moments when her little pointer finger came up and traced the inner parts of my arm. Interrupting our bedtime story she asked,
"Are these freckles mommy?"
I looked to where her little finger hovered over the marks inside my arm. Old PICC line scars that were long forgotten.
"No, those are all the spots that the doctors used to give mommy medicine when her lungs needed help."
"Oh, like your port?"
"Yes, similar to my port."
A few moments passed as she touched each scar, looking intently at each one.
"Look, these spots look like Orion's belt. Your spots make a constellation! How lucky!"
And just like that my scar covered arms became beautiful skies sparkling with stars and constellations.
Kaylee held the book in her hands and she sounded out words and read the pages to me. A new skill learned in kindergarten. As the evening grew later she started to get weary, "Can you read now?"
I took the book from her hands and sleepily started reading where she left off. She listened quietly for a few moments when her little pointer finger came up and traced the inner parts of my arm. Interrupting our bedtime story she asked,
"Are these freckles mommy?"
I looked to where her little finger hovered over the marks inside my arm. Old PICC line scars that were long forgotten.
"No, those are all the spots that the doctors used to give mommy medicine when her lungs needed help."
"Oh, like your port?"
"Yes, similar to my port."
A few moments passed as she touched each scar, looking intently at each one.
"Look, these spots look like Orion's belt. Your spots make a constellation! How lucky!"
And just like that my scar covered arms became beautiful skies sparkling with stars and constellations.
Friday, September 15, 2017
Kindergarten
A little over five years ago you were placed on my chest and we became almost inseparable. We were together 24/7 for most of your early life and your life intertwined with mine so much that figuring out where yours started and mine ended became blurred. Sure, there were weekly dates with your Nana and Papa, and daddy date afternoons, but mostly it was you and me, kid. And I loved nothing more than to spend my days with you.
And then three weeks ago you went to kindergarten.
This new and exciting journey started for you, the world expanding in ways you had no idea was even possible. Your mind opened to new experiences and thoughts and ideas. Your journey of exploring the world, was just beginning and you standing at the cusp of it felt large, and beautiful, miraculous, and overwhelming.
Your first few weeks brought a bit of separation anxiety, mornings of you grabbing me a little bit tighter at drop off, some tears in your eyes, and a large dose of uncertainty at this new expanding world. And every pick up was full of your love for school and declarations of "it wasn't worth the tears." And yet each morning that touch of separation anxiety appeared again, only to be eased the second I disappeared from sight.
But while your world was expanding and growing, mine felt like it was shrinking. My days continued very similar to how they had before. I went to Costco to get groceries. But there was no shouting, "all aboard!" cuing my favorite little girl to hop back on the side of the cart before changing aisles. The absence of chatter was deafening as washed the dishes or folded laundry. There was no little girl helping me pull the freshly washed sheets on my bed. I did my fall baking as I did every year, but there was no miniature chair pulled up to the counter with little feet standing on tip toes and little hands helping me stir. And to be perfectly honest those first few weeks were tougher on me than they were for you.
As we are finishing our third week of school, you're getting used to the routine and feeling less anxious at drop off. And just as you are getting used to your new routine, I am getting used to my new routine as well. I am finding new ways to spend my time and replacing old traditions with new ones. I feel overwhelmingly grateful I was able to spend so much time with you for the first five years of your life. I feel even more grateful I am well enough to watch you take your first real steps of independence into the world. What a magical journey we have been on!
And then three weeks ago you went to kindergarten.
This new and exciting journey started for you, the world expanding in ways you had no idea was even possible. Your mind opened to new experiences and thoughts and ideas. Your journey of exploring the world, was just beginning and you standing at the cusp of it felt large, and beautiful, miraculous, and overwhelming.
Your first few weeks brought a bit of separation anxiety, mornings of you grabbing me a little bit tighter at drop off, some tears in your eyes, and a large dose of uncertainty at this new expanding world. And every pick up was full of your love for school and declarations of "it wasn't worth the tears." And yet each morning that touch of separation anxiety appeared again, only to be eased the second I disappeared from sight.
But while your world was expanding and growing, mine felt like it was shrinking. My days continued very similar to how they had before. I went to Costco to get groceries. But there was no shouting, "all aboard!" cuing my favorite little girl to hop back on the side of the cart before changing aisles. The absence of chatter was deafening as washed the dishes or folded laundry. There was no little girl helping me pull the freshly washed sheets on my bed. I did my fall baking as I did every year, but there was no miniature chair pulled up to the counter with little feet standing on tip toes and little hands helping me stir. And to be perfectly honest those first few weeks were tougher on me than they were for you.
As we are finishing our third week of school, you're getting used to the routine and feeling less anxious at drop off. And just as you are getting used to your new routine, I am getting used to my new routine as well. I am finding new ways to spend my time and replacing old traditions with new ones. I feel overwhelmingly grateful I was able to spend so much time with you for the first five years of your life. I feel even more grateful I am well enough to watch you take your first real steps of independence into the world. What a magical journey we have been on!
Friday, August 4, 2017
Only Children
I was laying in bed on a warm summer morning, fan whirring above me and sunlight pouring through the blinds. Kaylee, only a few days old, was nuzzled under my chin and I was surrounded by the smell of her sweet milky breath and my only thought was that this would not be the last newborn of mine that I would snuggle. I believed with every ounce of my soul in that very moment that I was made to be a mother and that sweet Kaylee would not be the only child I would mother.
As time went on the longing for another baby grew stronger. When Kaylee turned one I felt such a strong desire to have another child that I am sure if CF wasn't a factor I would have been one of those mothers with two children under the age of two...on purpose! As much as my heart told me I needed another child, my mind knew that with my health it was not a possibility. The problem with the heart is that is doesn't listen to reason. The feelings only intensified when Kaylee was around two because everyone seemed to ask, "So when are you having another?" and all my friends around me started announcing their second pregnancies. The heartbreak I felt every time someone asked me about baby number two was almost too much to bare.
And as Kaylee got older I got comments from others about why I needed to have at least one more child. Without knowing my circumstances people (often strangers) would say things like, if she is an only she will be weird, she will be lonely, she will be social awkward. And I am not sure why anyone would tell a mother that her family size will be detrimental to their child's wellbeing. I will never understand how hurtful and heartless some people can be. And of all the negative family dynamics in this world (abuse, neglect, addiction) I think having a small family is pretty low on the list of negatives. And yet when you are desperate for another child these comments add layers of guilt to your existing grief.
When Kaylee was around 3 and my friends were in the throws of new walkers mixed with toddlers I started to see a new perspective. Yes, I still would have loved another baby, but at the same time I realized there are major benefits to having only one. There are pros and cons to every family situation, but my perspective switched from focusing on all the cons to focusing on the pros of having an only child. And you know what? There are a ton of benefits to having an only child! And as Kaylee gets older I am reassured that all those worries that she will be weird or antisocial or lonely just aren't true! Over time we met more and more only children (there are 3 other only children on our small street and one of Kaylee's best friends is an only) and seeing these happy well adjusted only children was more proof that families do not come in a one size fits all.
Last night, a neighbor saw me at the park. She was there with her only child who is 8. We were chatting as the kids were playing and she asked if we were going to have another. For the first time I didn't even flitch when the question was asked and was confident in saying, "Nope, we are done." She confided in me that she was not preventing pregnancy, but wasn't technically trying for a baby. She said she was leaving it up to fate if another baby comes along. With her own fertility issues you would think she would be more understanding that often people don't just get to choose their family size and spacing. Yet she felt the need to tell me what to do with my fertility. She said, "But look how beautiful the baby you made is, shouldn't we all just fill this world with children that are good people and will make this world a better place?" And for the first time in my life I was 100% sure when I said, "We feel we have the perfect little family and are content with Kaylee."
In the past these conversations would have resulted in my crying when I got home, but somewhere along the line that has changed. I went home feeling eternally grateful for the life I do have. My husband and I love each other dearly and we are both in love with this amazing child we made. If it weren't for CF we would not have chosen to be a small family of three and yet I can honestly say that I can not imagine our lives any other way.
As time went on the longing for another baby grew stronger. When Kaylee turned one I felt such a strong desire to have another child that I am sure if CF wasn't a factor I would have been one of those mothers with two children under the age of two...on purpose! As much as my heart told me I needed another child, my mind knew that with my health it was not a possibility. The problem with the heart is that is doesn't listen to reason. The feelings only intensified when Kaylee was around two because everyone seemed to ask, "So when are you having another?" and all my friends around me started announcing their second pregnancies. The heartbreak I felt every time someone asked me about baby number two was almost too much to bare.
And as Kaylee got older I got comments from others about why I needed to have at least one more child. Without knowing my circumstances people (often strangers) would say things like, if she is an only she will be weird, she will be lonely, she will be social awkward. And I am not sure why anyone would tell a mother that her family size will be detrimental to their child's wellbeing. I will never understand how hurtful and heartless some people can be. And of all the negative family dynamics in this world (abuse, neglect, addiction) I think having a small family is pretty low on the list of negatives. And yet when you are desperate for another child these comments add layers of guilt to your existing grief.
When Kaylee was around 3 and my friends were in the throws of new walkers mixed with toddlers I started to see a new perspective. Yes, I still would have loved another baby, but at the same time I realized there are major benefits to having only one. There are pros and cons to every family situation, but my perspective switched from focusing on all the cons to focusing on the pros of having an only child. And you know what? There are a ton of benefits to having an only child! And as Kaylee gets older I am reassured that all those worries that she will be weird or antisocial or lonely just aren't true! Over time we met more and more only children (there are 3 other only children on our small street and one of Kaylee's best friends is an only) and seeing these happy well adjusted only children was more proof that families do not come in a one size fits all.
Last night, a neighbor saw me at the park. She was there with her only child who is 8. We were chatting as the kids were playing and she asked if we were going to have another. For the first time I didn't even flitch when the question was asked and was confident in saying, "Nope, we are done." She confided in me that she was not preventing pregnancy, but wasn't technically trying for a baby. She said she was leaving it up to fate if another baby comes along. With her own fertility issues you would think she would be more understanding that often people don't just get to choose their family size and spacing. Yet she felt the need to tell me what to do with my fertility. She said, "But look how beautiful the baby you made is, shouldn't we all just fill this world with children that are good people and will make this world a better place?" And for the first time in my life I was 100% sure when I said, "We feel we have the perfect little family and are content with Kaylee."
In the past these conversations would have resulted in my crying when I got home, but somewhere along the line that has changed. I went home feeling eternally grateful for the life I do have. My husband and I love each other dearly and we are both in love with this amazing child we made. If it weren't for CF we would not have chosen to be a small family of three and yet I can honestly say that I can not imagine our lives any other way.
Saturday, June 17, 2017
Why Don't I have CF
Kaylee: "How did you get CF mom?"
Me: Very simple explanation of genetics.
Kaylee: "So why didn't I get CF?"
Me: "Well, mommy gave you one CF gene, but daddy did not give you the gene. You need 2 genes to have CF.
Kaylee: clearly upset, "WHY didn't daddy give me the gene? I want CF just like YOU!"
*a few seconds later*
Kaylee: "Will my kids have CF? Because if they do I will be really jealous!"
Can my daughter always be this naïve and innocent when it comes to my disease? And can I always remain perfect in her eyes? No? I guess I should enjoy it while it lasts.
Me: Very simple explanation of genetics.
Kaylee: "So why didn't I get CF?"
Me: "Well, mommy gave you one CF gene, but daddy did not give you the gene. You need 2 genes to have CF.
Kaylee: clearly upset, "WHY didn't daddy give me the gene? I want CF just like YOU!"
*a few seconds later*
Kaylee: "Will my kids have CF? Because if they do I will be really jealous!"
Can my daughter always be this naïve and innocent when it comes to my disease? And can I always remain perfect in her eyes? No? I guess I should enjoy it while it lasts.
Saturday, June 10, 2017
Preschool Graduation
Thursday June 1st was Kaylee's last day of preschool. I have so many mixed feeling about this very short chapter in her life ending. She loved preschool and made a lot of growth which was fun to watch as her parent. She made her first self chosen best friend (who also happened to be the teacher's daughter). She was at a play based school and spent almost 90% of her free choice time in the art room being creative, which was exactly what I wanted for her- the freedom to follow her passion. Throughout the year we watched her become more independent and social and she loved her school experience. I know she is going to miss preschool a lot!
Kaylee was at a parent participation preschool and I was also the class parent which meant I was there a lot! I made so many friends and felt that so many people at the school became like family. Not only did I befriend other parents, I watched all the kids grow over the span of the year and I can tell you all of their favorite colors, which snacks they liked, their favorite preschool activity, and all about their siblings and pets. I bonded with so many of the kids and I will miss them a lot! Although I will admit those 2.5 hour preschool volunteer days (twice a month) sure did wear me out! My mind and soul will miss my volunteer days, but my body may be a little excited for a break! Oh, and getting away fro preschool germs sounds rather nice, this winter (post-Christmas) was a doozy for sickness!
However, there is a part of me that is excited to have my baby to myself again! Summer means more time to be with my girl before she has to go to kindergarten five days a week (sob!). It also means more time for swimming, gardening together, and trying local museums and playdates.
These little ones grow up so very fast and I know that before long I will be writing a post about her first day of kindergarten and this last summer together before "real" school will be a distant memory. I am excited I am here to witness it all and can't wait to see what next year brings for us.
*Since I forgot to update, we finally got called by our first choice school and we got in! Whew, that was a stressful process, but we are guaranteed a spot every year now until she graduates from elementary school.
Kaylee was at a parent participation preschool and I was also the class parent which meant I was there a lot! I made so many friends and felt that so many people at the school became like family. Not only did I befriend other parents, I watched all the kids grow over the span of the year and I can tell you all of their favorite colors, which snacks they liked, their favorite preschool activity, and all about their siblings and pets. I bonded with so many of the kids and I will miss them a lot! Although I will admit those 2.5 hour preschool volunteer days (twice a month) sure did wear me out! My mind and soul will miss my volunteer days, but my body may be a little excited for a break! Oh, and getting away fro preschool germs sounds rather nice, this winter (post-Christmas) was a doozy for sickness!
However, there is a part of me that is excited to have my baby to myself again! Summer means more time to be with my girl before she has to go to kindergarten five days a week (sob!). It also means more time for swimming, gardening together, and trying local museums and playdates.
These little ones grow up so very fast and I know that before long I will be writing a post about her first day of kindergarten and this last summer together before "real" school will be a distant memory. I am excited I am here to witness it all and can't wait to see what next year brings for us.
*Since I forgot to update, we finally got called by our first choice school and we got in! Whew, that was a stressful process, but we are guaranteed a spot every year now until she graduates from elementary school.
Monday, March 6, 2017
These moments in time
Dear Kaylee,
There are some moments in motherhood that I wish I could freeze time and relive over and over. At this age right now, motherhood is so much less grueling than when you were a baby. Sure, there are still bad moods, and the ever growing "attitude" and moments that can be tough, but the day to day workload of diapering and feeding and rocking and calming two year old tantrums are all a distant memory. I find my moments with you, as a kid, rather than a baby so much more relaxed. I held on to your babyhood so tightly because my love for little baby Kaylee was so strong I couldn't imagine that I could continue to love motherhood as much as I did when you were an infant snuggled in my arms. Oh, but a mothers love doesn't know how to regress, it only grows and grows.
One of my absolute favorite activities to do with you these days is read to you while you keep busy doing art work. When you were three I started reading kid chapter books (Ramona!), but as you got older you became more and more interested in the chapter books I was reading for myself. I joined a book club about a year ago and you often asked for the details of the books we were reading. Your interest in my books continued to grow and I found myself reading excerpts of the book club books I was reading. As long as you found an activity to do while I read, you wanted longer and longer excerpts. Now, you beg me to read my books to you while you busy yourself with crafts. Last Saturday I read almost 100 pages to you in the course of a day. Every time I tried to take a break you would beg me to continue.
Of course, my sweet sensitive child, I need to edit or omit parts because you are only four! You pay attention at times and at other times I know your mind wanders which makes it easier for me to skip over parts, improvise, or "lose" my spot only to pick up again a few pages later. You have rejected bedtime stories in exchange for listening to me read whatever I am currently reading.
This, my dear girl, is the parts of motherhood that make me thankful for the here and now. It is easy to look at old pictures of you when your cheeks were chubby and your hair still held tight curls around the nape of your neck and miss those sweet and tiring baby days. These magical moments are especially amazing because I know we will never have to leave them in the past. These traditions we can continue forever. Eventually, we will swaps roles, you will read chapter books to me! And even when you grow up and move from my home, we can read the same book no matter how close or far you live and we can discuss the books over coffee or, if distance requires, over the phone.
My sweet girl, I feel so very lucky to have you in my life and as each day passes my love for you just grows and grows. Thank you for going on this adventure called life with me and daddy. You bring so much joy to our lives and we can't wait to continue to watch you grow!
Love,
Mom
There are some moments in motherhood that I wish I could freeze time and relive over and over. At this age right now, motherhood is so much less grueling than when you were a baby. Sure, there are still bad moods, and the ever growing "attitude" and moments that can be tough, but the day to day workload of diapering and feeding and rocking and calming two year old tantrums are all a distant memory. I find my moments with you, as a kid, rather than a baby so much more relaxed. I held on to your babyhood so tightly because my love for little baby Kaylee was so strong I couldn't imagine that I could continue to love motherhood as much as I did when you were an infant snuggled in my arms. Oh, but a mothers love doesn't know how to regress, it only grows and grows.
One of my absolute favorite activities to do with you these days is read to you while you keep busy doing art work. When you were three I started reading kid chapter books (Ramona!), but as you got older you became more and more interested in the chapter books I was reading for myself. I joined a book club about a year ago and you often asked for the details of the books we were reading. Your interest in my books continued to grow and I found myself reading excerpts of the book club books I was reading. As long as you found an activity to do while I read, you wanted longer and longer excerpts. Now, you beg me to read my books to you while you busy yourself with crafts. Last Saturday I read almost 100 pages to you in the course of a day. Every time I tried to take a break you would beg me to continue.
Of course, my sweet sensitive child, I need to edit or omit parts because you are only four! You pay attention at times and at other times I know your mind wanders which makes it easier for me to skip over parts, improvise, or "lose" my spot only to pick up again a few pages later. You have rejected bedtime stories in exchange for listening to me read whatever I am currently reading.
This, my dear girl, is the parts of motherhood that make me thankful for the here and now. It is easy to look at old pictures of you when your cheeks were chubby and your hair still held tight curls around the nape of your neck and miss those sweet and tiring baby days. These magical moments are especially amazing because I know we will never have to leave them in the past. These traditions we can continue forever. Eventually, we will swaps roles, you will read chapter books to me! And even when you grow up and move from my home, we can read the same book no matter how close or far you live and we can discuss the books over coffee or, if distance requires, over the phone.
My sweet girl, I feel so very lucky to have you in my life and as each day passes my love for you just grows and grows. Thank you for going on this adventure called life with me and daddy. You bring so much joy to our lives and we can't wait to continue to watch you grow!
Love,
Mom
Saturday, February 11, 2017
A Day In The Life- Preschool
I wrote a blog about our daily routine when Kaylee was a newborn and again when she was about one. I loved looking back at it and was shocked at how long it took to do my treatments! I forgot that I had to break them up throughout the day because a baby's attention span is so short. I decided I would do "A Day In The Life Preschool" version since I know someday these moments will seem like such a distant memory. So like any "Day In The Life" series this is a rough idea of out day because as we all know children often have their own agenda.
5:20
5:20
- My alarm goes off and I quickly get my bathing suit on, pull on sweats drink a glass of milk and drive to the gym.
- I swim for about 30 minutes, shower at the gym and come home.
- I arrive home from the gym and my family is still sleeping. I start my Vest and all my nebs.
- A very sleepy Kay comes to find me in the living room. (Why are kids so darn cute when they first wake up?) I am usually almost done with treatments, if not completely done. If she gets up before I am done I let her watch Daniel Tiger until I am done.
- I usually brew a cup of coffee for me and start breakfast. I always let her choose between eggs and oatmeal. I do not have CFRD, but I don't do well with sugar in the morning so breakfast is never something convenient like cereal. Even my (and Kaylee's by default) oatmeal has to be a mix of oats, chia, ground almonds and flax meal because straight oats cause issues in the morning too. The older I get the more complicated my body gets!
- I also do morning chores like empty the dishwasher, clean the breakfast dishes, and sometimes throw a load of laundry in the wash. I am so bad at letting laundry pile up.
- Kaylee gets dressed, we brush teeth, and I always do her hair (having her hair off her face means she touches her face less often which is better for controlling germs even though she has no idea that is why I do it. I am trying to be germ cautious without making her realize it so that she doesn't become a germaphobe). Then we hop in the car and go to preschool.
- Kaylee likes to be the first person in line so we are usually the first people there and I let her play on the playground until school starts. There are a couple other early birds so I get to chat with some of the other parents before school.
- Preschool! Kay goes to a parent participation preschool so I am there working twice a month. I am also the class mom so I go to all holiday parties and any big events so I feel like I am there a lot, which I love!
- If I don't work at the school I usually try to make phone calls or other boring errands that aren't fun for Kaylee. On days my husband is home we sit around and drink coffee.
- Pick up and come home for lunch.
- We either go to the park, ride bikes, take a walk or run some errands. I usually do some chores (aren't house chores endless?). Really, we have no consistency during this time. On my Cayston months I do my afternoon nebs.
- Quiet time! Kaylee plays independently and I get to rest as well. We both really need quiet time or we both get grumpy!
- Kaylee has a snack, plays and then we get dinner ready (Kaylee usually helps).
- My husband usually gets home right before we have dinner although his schedule can be all over the place so a few days a week he misses dinner.
- Kaylee and my husband play and I clean up dinner. I often do treatments during this time or if I join in I will do treatments after she goes to bed. If my husband works late I usually do treatments after Kaylee is asleep so then the two of us play together after I clean up.
- Kaylee picks out her clothes for the next day and I hang them on her doorknob so she can get herself dressed in the morning.
- We do a five minute clean to make sure all her toys are cleaned up before bedtime.
- Kaylee has a small snack before bed.
- Kaylee gets in her pajamas and brushes teeth.
- My husband and I read books (mine are in English and his are in Spanish) and then we each tell her a story (also in English and Spanish). Mine usually incorporate something we did that day, after telling stories every.single.night for years it is hard to be creative. Then Kaylee stalls as much as humanly possible.
- Finally, Kaylee goes to bed!
- I do treatments (if I hadn't already done them)
- I set out my gym bag and everything I need in the morning.
- I take all my pills
- I eat a snack so I can take Orkambi (my morning dose is with breakfast)
- I also do the evening chores like run the dishwasher.
- Bed!!!
Thursday, November 10, 2016
Passage Of Time
"Remember when you were in the hospital?" Kaylee says from the backseat of the car.
My grip on the steering wheel tightens and I feel my chest tighten along with it. I take a deep breath, my last hospital stay was a little over a year ago, but the stress and anxiety my absence during the hospital admission caused Kaylee was something that she still brings up from time to time.
"Do you remember how I used to eat all your hospital food?"
I feel relief wash over me. This conversation isn't going to be like so many other conversations she has about the hospital, begging me to promise that I will never go to the hospital again, a promise I can't honestly make.
We share memories about her coming and eating my meals and how I always saved her dessert. We reminisced about how I always ordered an extra dessert so she could have treats when she came to visit. How one time my dinner arrived too late and you had just left when my tray arrived. My floor nurse that day, knowing how much you loved the sorbet, ran down the hall and stopped the elevator door to make sure you got your sorbet before leaving. You mention coloring together in my hospital bed and we bring up all the happy and fun memories we had while I was inpatient.
The car is quiet for a minute when I hear, "I wish daddy would go to the hospital so we could visit him and eat all his food and color." Kaylee is used to daddy working all day so the idea of him being gone felt safer and less scary which is why I am sure she hoped for him to be in the hospital and not me. But the fact that over the last year her memory filtered out the hard parts of the hospital, but retained some of the fun times we had together while I was inpatient, so much so that she wanted to return and relive the good moments made my heart swell.
So often I worry how my disease, especially hospital stays, disrupts Kaylee's happy childhood. I feel an immense amount of guilt over how my life negatively impacts hers. And yet, the very worst part of Cystic Fibrosis to a small child, having it take away your mommy for 8 days, has left her with some happy memories lets me let go of a bit of that mothers guilt that seems to go hand in hand with the disease. I know Cystic Fibrosis will get harder as she gets older and becomes more aware of the long term repercussions of the disease, but for now I am happy to know that together we can make happy memories even in the midst of this hideous disease that is great at leaving destruction and sadness in its wake.
My grip on the steering wheel tightens and I feel my chest tighten along with it. I take a deep breath, my last hospital stay was a little over a year ago, but the stress and anxiety my absence during the hospital admission caused Kaylee was something that she still brings up from time to time.
"Do you remember how I used to eat all your hospital food?"
I feel relief wash over me. This conversation isn't going to be like so many other conversations she has about the hospital, begging me to promise that I will never go to the hospital again, a promise I can't honestly make.
We share memories about her coming and eating my meals and how I always saved her dessert. We reminisced about how I always ordered an extra dessert so she could have treats when she came to visit. How one time my dinner arrived too late and you had just left when my tray arrived. My floor nurse that day, knowing how much you loved the sorbet, ran down the hall and stopped the elevator door to make sure you got your sorbet before leaving. You mention coloring together in my hospital bed and we bring up all the happy and fun memories we had while I was inpatient.
The car is quiet for a minute when I hear, "I wish daddy would go to the hospital so we could visit him and eat all his food and color." Kaylee is used to daddy working all day so the idea of him being gone felt safer and less scary which is why I am sure she hoped for him to be in the hospital and not me. But the fact that over the last year her memory filtered out the hard parts of the hospital, but retained some of the fun times we had together while I was inpatient, so much so that she wanted to return and relive the good moments made my heart swell.
So often I worry how my disease, especially hospital stays, disrupts Kaylee's happy childhood. I feel an immense amount of guilt over how my life negatively impacts hers. And yet, the very worst part of Cystic Fibrosis to a small child, having it take away your mommy for 8 days, has left her with some happy memories lets me let go of a bit of that mothers guilt that seems to go hand in hand with the disease. I know Cystic Fibrosis will get harder as she gets older and becomes more aware of the long term repercussions of the disease, but for now I am happy to know that together we can make happy memories even in the midst of this hideous disease that is great at leaving destruction and sadness in its wake.
Wednesday, September 28, 2016
Preschool and Cystic Fibrosis
When my husband and I toured preschools in the area, like all parents we had a checklist of things we were looking for. For us, the most important aspect was that it was a parent participation preschool. We wanted to be actively involved in our daughter's first school experience. We also liked the community feel of knowing all the children and their parents in addition to the teachers. Some other items on our checklist included a play based school with small class sizes. Since Kaylee is drawn to all things art related we also wanted a lot of access to open ended art to allow her to follow her (current) passion.
Having Cystic Fibrosis, there was another concern that was on my mind that I am sure other parents do not consider. Germs! At the time of school tours my health was doing really well, but having low lung function and knowing how complicated CF and colds can be I worried about the sickness Kaylee and I would be exposed to. We looked for places with several separate rooms that the children could venture in so they would't all be cooped up in the same room, we looked for sick day policies and small classes. We found a school that seemed to fit our criteria, but we knew germs and sickness in the preschool setting was inevitable. Kids that young just don't have the same concerns about sanitation. Coughs go uncovered, fingers find their way into noses and hand washing skills are sub-par.
And then summer came and with it an unusual summer exacerbation that didn't want to leave. As the school year approached my exacerbation was unwavering and my concerns grew. I laid awake at night wondering if sending Kaylee to school while I was having trouble regaining stability in my health was a good idea. I toyed with pulling her from school even as the first day of school was just a few days away. I started bringing up ways to stay healthy with Kay and to avoid germs to the best of her ability (while being careful not to make her paranoid or anxious about they idea of germs).
Finally, I turned to fellow CF moms and got some great advice from women who are in my same situation. I got tips from moms with lower lung function, those on the transplant list and even a few moms post transplant. I thought I would pass along the ideas they shared. Of course air born sickness is impossible to avoid outside of avoiding all public places, but I am hoping these extra precautions will reduce the amount of germs we get exposed to.
Having Cystic Fibrosis, there was another concern that was on my mind that I am sure other parents do not consider. Germs! At the time of school tours my health was doing really well, but having low lung function and knowing how complicated CF and colds can be I worried about the sickness Kaylee and I would be exposed to. We looked for places with several separate rooms that the children could venture in so they would't all be cooped up in the same room, we looked for sick day policies and small classes. We found a school that seemed to fit our criteria, but we knew germs and sickness in the preschool setting was inevitable. Kids that young just don't have the same concerns about sanitation. Coughs go uncovered, fingers find their way into noses and hand washing skills are sub-par.
And then summer came and with it an unusual summer exacerbation that didn't want to leave. As the school year approached my exacerbation was unwavering and my concerns grew. I laid awake at night wondering if sending Kaylee to school while I was having trouble regaining stability in my health was a good idea. I toyed with pulling her from school even as the first day of school was just a few days away. I started bringing up ways to stay healthy with Kay and to avoid germs to the best of her ability (while being careful not to make her paranoid or anxious about they idea of germs).
Finally, I turned to fellow CF moms and got some great advice from women who are in my same situation. I got tips from moms with lower lung function, those on the transplant list and even a few moms post transplant. I thought I would pass along the ideas they shared. Of course air born sickness is impossible to avoid outside of avoiding all public places, but I am hoping these extra precautions will reduce the amount of germs we get exposed to.
- I asked the teacher to sit Kaylee away from kids that recently came back to school from being out sick or those who have a cough or seem unwell. There is no assigned seating in her class so this is really realistic, but may prove more challenging as she enters grade school with her assigned desk.
- Removing all school clothes (and shoes) the second we get home. Everything goes in a wash bag in the garage. This one frustrates Kaylee so much because she doesn't want to be bothered with changing again. My husband has done the same thing with his work clothes for years in order to keep us healthier so I am hoping this becomes a family norm rather than a point of frustration.
- We both sanitize our hands the second we get in the car.
- The school requires kids to wash their hands before snack, but I also gave Kaylee a small hand sanitizer (with glitter) on her backpack in hopes of encouraging her to use it other times throughout the day. I am pretty sure she only touched it once, but it is better than nothing.
- I put Kaylee's hair up everyday that she goes to school to cut down on the amount of times she touches her face (she brushes her hair from her face a lot when it is left down). I tell her I am putting her hair up to keep it clean while painting and doing crafts because I really don't want her to become paranoid about germs. She doesn't need the burden of my health on her shoulders. She totally buys it because I can't even begin to tell you how many times at home we have had to clean paint or glue out of her hair while she was busy crafting.
- We talked about not touching out eyes, nose and mouth. We talked about moving away from kids that are coughing or sneezing a lot and washing our hands.
Saturday, September 17, 2016
Preschool
My baby took her first real steps out into the real world this past week. On Tuesday September 13th, Kaylee, my husband and I walked hand in hand into a local preschool, helped Kaylee hang her backpack on a hook, and watched from the sidelines as she explored the school where she would spend two mornings a week.
When the teacher started calling the kids to the carpet to start their very first day I snuck over to say my goodbyes. As I was hugging my baby goodbye, feeling my heart swell with so much pride I could feel the pride forming tiny tears in my eyes, I asked Kaylee if she was ready for mommy and daddy to leave. I wanted to leave her when she felt strong and ready. She looked at me with those big blue eyes, wrapped her arms around me and said, "Mommy, I will let you go." And just like that she smiled, turned to the teacher only to turn back one time with a confident wave goodbye.
Her wording stuck with me as I walked down the hallway lined with miniature sized backpacks. "I will let you go..." I knew in my heart that she was the one ready to adventure out in the real world. Her words rang true that I was the one holding on so tight. I was the one that needed reassurance that it was okay to send the biggest piece of my heart out into the harsh world. I was the one that was having trouble reconciling that each year from here on out she would become more and more independent and I would ever so slightly fade into the background of her life. But I was the one that had trouble letting her go. Kaylee, full of curiosity and wonder and a healthy sense of naivety, was more than ready to find her own path.
To witness the confident, independent, and self assured little girl Kaylee has grown to be was enough to make my mommy heart swell so large it caused physically pain in my chest that morning as I got in my car and drove away. Even after four years of loving this child with every fiber of my being I am still in awe how the human heart can love so immensely!
When the teacher started calling the kids to the carpet to start their very first day I snuck over to say my goodbyes. As I was hugging my baby goodbye, feeling my heart swell with so much pride I could feel the pride forming tiny tears in my eyes, I asked Kaylee if she was ready for mommy and daddy to leave. I wanted to leave her when she felt strong and ready. She looked at me with those big blue eyes, wrapped her arms around me and said, "Mommy, I will let you go." And just like that she smiled, turned to the teacher only to turn back one time with a confident wave goodbye.
Her wording stuck with me as I walked down the hallway lined with miniature sized backpacks. "I will let you go..." I knew in my heart that she was the one ready to adventure out in the real world. Her words rang true that I was the one holding on so tight. I was the one that needed reassurance that it was okay to send the biggest piece of my heart out into the harsh world. I was the one that was having trouble reconciling that each year from here on out she would become more and more independent and I would ever so slightly fade into the background of her life. But I was the one that had trouble letting her go. Kaylee, full of curiosity and wonder and a healthy sense of naivety, was more than ready to find her own path.
To witness the confident, independent, and self assured little girl Kaylee has grown to be was enough to make my mommy heart swell so large it caused physically pain in my chest that morning as I got in my car and drove away. Even after four years of loving this child with every fiber of my being I am still in awe how the human heart can love so immensely!
Wednesday, August 17, 2016
Missing Butterflies
I have been posting so many boring health updates so I wanted to share a cute story for a change.
My four year old hates when I get IVs. She calls my accessed port "the tube" and there seems to be nothing she hates more than when I get "the tube." The last few times I needed IVs I was in the hospital so she equates IVs with mommy leaving.
My doctors agreed I could do home IVs this round of IVs (before we knew how disastrous it would all turn out) and I was hoping that would change Kaylee's feelings about "the tube." When my port is accessed the safety on the needle (the part that helps slip the needle into a sleeve when it is pulled from the port so that nurses don't stab themselves with my used needle) resembles a butterfly. So I tried to rename "the tube" to "my butterfly" to take away some of the fear she has put around my IVs.
Unfortunately, she still hated my butterfly and asked me daily when it would go away. After 21 days my husband pulled off my dressing and Kaylee watched as he pulled my port needle out of my port. We all cheered because it signaled IVs were done (even though it was bittersweet for me because I didn't feel any better). As I turned to look at Kaylee I saw her eyes full of tears, "Can you just wipe my blubbly eyes, mommy" (blubbly is what she calls her eyes when they are full of tears. It makes no sense, but she has been doing it since she was really little so it has become a real word in our household). My heart sank. I thought she would be overjoyed that my IVs were officially done and yet her eyes were full of tears.
"Can I ask why you are crying?"
The tears started flowing the second I said those words.
"I am going to miss your butterfly!"
I guess the end of IVs was bittersweet for Kaylee too. Sure, the dreaded tube was gone which meant fewer doctor visits, less restricted play with mommy, and no crazy IV schedules, but it also meant her beloved butterfly would be gone.
My four year old hates when I get IVs. She calls my accessed port "the tube" and there seems to be nothing she hates more than when I get "the tube." The last few times I needed IVs I was in the hospital so she equates IVs with mommy leaving.
 |
| Here is a picture of the butterfly after we de-accessed. No matter how many times I took this photo it came out blurry. Sorry! |
Unfortunately, she still hated my butterfly and asked me daily when it would go away. After 21 days my husband pulled off my dressing and Kaylee watched as he pulled my port needle out of my port. We all cheered because it signaled IVs were done (even though it was bittersweet for me because I didn't feel any better). As I turned to look at Kaylee I saw her eyes full of tears, "Can you just wipe my blubbly eyes, mommy" (blubbly is what she calls her eyes when they are full of tears. It makes no sense, but she has been doing it since she was really little so it has become a real word in our household). My heart sank. I thought she would be overjoyed that my IVs were officially done and yet her eyes were full of tears.
"Can I ask why you are crying?"
The tears started flowing the second I said those words.
"I am going to miss your butterfly!"
I guess the end of IVs was bittersweet for Kaylee too. Sure, the dreaded tube was gone which meant fewer doctor visits, less restricted play with mommy, and no crazy IV schedules, but it also meant her beloved butterfly would be gone.
Tuesday, July 5, 2016
Accountability
Most mornings I start my day at 5:20am. I crawl out of bed, pull on a bathing suit, puff my bronchodilator, grab a glass of milk and drive to the gym. I come home, showered, dressed, and having my workout done to a sleeping household. I quickly start my treatments so I don't waste any precious time before my daughter wakes up. She comes wandering into the living room sometime around 7-7:30am. By this point, I am sipping my morning coffee and somewhat impatiently waiting for her to wake up. My favorite part of this routine is that when Kaylee wakes up I am all hers. I can make her a healthy breakfast and sit and chat about our plans for the day. She gets a mommy that is totally present.
While I was feverish and sick I took a week off from the gym. My body was exhausted and I was able to sleep an extra 2 hours everyday which I felt I desperately needed. However, this meant she wandered into my room to wake me up when she was ready to start her day. I was groggy and tired and had no desire to get out of bed while she was bouncing with morning energy that only small children seem to possess. I threw fruit at her and snapped on the TV so I could start my 45 minutes of treatments. I was interrupted because she was still hungry, needed water, was bored watching TV, etc. She would try to tell me something, but I would be coughing so violently I couldn't respond which left her repeating herself over and over. In turn, it made me frustrated that she kept repeating things while I was coughing so hard I couldn't breathe and she got frustrated that I wasn't responding. My 45 minute treatments turned into an hour because of all the times I had to stop. By 8:30 I still wasn't showered, neither of us had breakfast and we were both a little grouchy. One morning after I strapped on my vest to start my treatments Kaylee asked me teary eyed, "Mommy, when are you going to do shaky (vest) in the middle of the night again? I like when you do that better."
Those two sentences were all the motivation and reassurance that I needed to know that my workout routine was something I needed to keep up for a very long time. It is better for my health and my lungs. It is better for me because I can do my treatments uninterrupted and in peace (the way I like it), and just in case that wasn't enough motivation, it made may daughter's morning experience so much better. Trying to fit in treatments and an exercise routine while parenting young children can be a challenge at best, but this time having a small child request that I workout again with tears in her eyes (although for selfish reasons on her part) was the very best motivation I could have asked for.
While I was feverish and sick I took a week off from the gym. My body was exhausted and I was able to sleep an extra 2 hours everyday which I felt I desperately needed. However, this meant she wandered into my room to wake me up when she was ready to start her day. I was groggy and tired and had no desire to get out of bed while she was bouncing with morning energy that only small children seem to possess. I threw fruit at her and snapped on the TV so I could start my 45 minutes of treatments. I was interrupted because she was still hungry, needed water, was bored watching TV, etc. She would try to tell me something, but I would be coughing so violently I couldn't respond which left her repeating herself over and over. In turn, it made me frustrated that she kept repeating things while I was coughing so hard I couldn't breathe and she got frustrated that I wasn't responding. My 45 minute treatments turned into an hour because of all the times I had to stop. By 8:30 I still wasn't showered, neither of us had breakfast and we were both a little grouchy. One morning after I strapped on my vest to start my treatments Kaylee asked me teary eyed, "Mommy, when are you going to do shaky (vest) in the middle of the night again? I like when you do that better."
Those two sentences were all the motivation and reassurance that I needed to know that my workout routine was something I needed to keep up for a very long time. It is better for my health and my lungs. It is better for me because I can do my treatments uninterrupted and in peace (the way I like it), and just in case that wasn't enough motivation, it made may daughter's morning experience so much better. Trying to fit in treatments and an exercise routine while parenting young children can be a challenge at best, but this time having a small child request that I workout again with tears in her eyes (although for selfish reasons on her part) was the very best motivation I could have asked for.
Monday, June 9, 2014
What It Means To Be Different
The other day I was sitting with a good friend of mine chatting while sipping coffee (hers was decaf- she is trying for baby number 2). We have been friends for years and we used to be so similar, we were always in the same stages of life. We went to college together and spent countless hours studying side by side, got married less than a year apart and shared and planned every little wedding detail together, had our babies 3 months apart and took yoga together, went to the same midwife, and eventually breastfed, burped, and soothed our babies in each other's homes. But somewhere along the line my life stalled out and hers continued forward, I got left behind. I are no longer on the same page. I am not sure I belong in the same book anymore.
You see, when we get together she chats about what most 30-something year olds chat about, things I should easily relate to. She talked about how excited she was that they are trying for baby number two. How she wants a large family- 3 or 4 total. She want a house full of kids!
I kept thinking how I will never be healthy enough to have another baby. My husband and I don't have the luxury to discuss how many kids we want because CF took that choice from us.
She was chatting about how she found the perfect school to send her son to. One that does amazing enrichment programs and has a great student teacher ratio.
I kept wondering if I would live long enough to see Kaylee go to kindergarten. With my lung function so low and the fear of sickness lurking around every corner. I wonder how much longer i will be around to raise my precious little girl. Please, oh please, let me see her go to kindergarten. I want to at least live long enough for her to have memories of me.
She was talking about how her and hubby want to take a little vacation in the mountains, you know to get away from it all.
I was thinking about how my husband absolutely loves going to the mountains, but how I could barely breath in the high altitude when my lung function was in the 50s. I can't fathom the struggle with 30%. My husband's favorite vacation spot is a place we can't go anymore. Maybe after I die he can go with his new wife...
She was talking about how she was a crazy teenager and that as hard as raising a toddler is that raising a teenager will be 1000x harder.
I kept silently praying that I can know what Kaylee will look like as a teenager. I want to know if her hair stays curly, if her eyes shine just as bright. Will she be smart and studious, athletic, artist? What will her friends be like? What class will she hate? Which will she love? Oh. I don't care if she makes me drop her off at the end of the street because she is humiliated to be seen in the car with her mom, I just so desperately want to know if that dimple in her left cheek will still be there when turns 16.
I agree and nod and say all the things I am supposed to say. But I don't understand her world- your world. It is not the same that I live in. I do not speak of my horrid reality, it is one you do not wish to know. Nobody wishes to see the world I live in and so I live in it by myself. I think these thoughts, but they will never escape from my lips. Your world has you too preoccupied with the wonderful possibilities your youth gives you, of the vast and open life that lays ahead. My world is rapidly collapsing on me and I won't be so wretched as to invite you in. Nobody deserves to be here.
For now, I will pretend. Pretend to understand the excitement of being young and free. I will pretend to understand what it feels like to know your life has just started rather than wondering how rapidly it will end. I will pretend my life is like yours when in reality I know nothing of the life you live and in reality you know nothing of mine.
You see, when we get together she chats about what most 30-something year olds chat about, things I should easily relate to. She talked about how excited she was that they are trying for baby number two. How she wants a large family- 3 or 4 total. She want a house full of kids!
I kept thinking how I will never be healthy enough to have another baby. My husband and I don't have the luxury to discuss how many kids we want because CF took that choice from us.
She was chatting about how she found the perfect school to send her son to. One that does amazing enrichment programs and has a great student teacher ratio.
I kept wondering if I would live long enough to see Kaylee go to kindergarten. With my lung function so low and the fear of sickness lurking around every corner. I wonder how much longer i will be around to raise my precious little girl. Please, oh please, let me see her go to kindergarten. I want to at least live long enough for her to have memories of me.
She was talking about how her and hubby want to take a little vacation in the mountains, you know to get away from it all.
I was thinking about how my husband absolutely loves going to the mountains, but how I could barely breath in the high altitude when my lung function was in the 50s. I can't fathom the struggle with 30%. My husband's favorite vacation spot is a place we can't go anymore. Maybe after I die he can go with his new wife...
She was talking about how she was a crazy teenager and that as hard as raising a toddler is that raising a teenager will be 1000x harder.
I kept silently praying that I can know what Kaylee will look like as a teenager. I want to know if her hair stays curly, if her eyes shine just as bright. Will she be smart and studious, athletic, artist? What will her friends be like? What class will she hate? Which will she love? Oh. I don't care if she makes me drop her off at the end of the street because she is humiliated to be seen in the car with her mom, I just so desperately want to know if that dimple in her left cheek will still be there when turns 16.
I agree and nod and say all the things I am supposed to say. But I don't understand her world- your world. It is not the same that I live in. I do not speak of my horrid reality, it is one you do not wish to know. Nobody wishes to see the world I live in and so I live in it by myself. I think these thoughts, but they will never escape from my lips. Your world has you too preoccupied with the wonderful possibilities your youth gives you, of the vast and open life that lays ahead. My world is rapidly collapsing on me and I won't be so wretched as to invite you in. Nobody deserves to be here.
For now, I will pretend. Pretend to understand the excitement of being young and free. I will pretend to understand what it feels like to know your life has just started rather than wondering how rapidly it will end. I will pretend my life is like yours when in reality I know nothing of the life you live and in reality you know nothing of mine.
Saturday, November 23, 2013
Hola, Hola, Hola
I plan on bringing you Part 2 of my port surgery, but I wanted to share the "joys" of chatterbox toddler.
In Spanish class Kay is learning this song that basically goes, "Hola, hola, hola, (insert animal name here). It is then followed by a little sentence about that animal. For example, the duck waggles his bottom. Anyway, I was walking Kaylee to the park in her stroller yesterday (so we could crunch leaves) and she started singing her song. I loved listening to her little voice singing out for the world to hear until I realized she completely changed the lyrics...
Hola, hola, hola, boob boobs
hola, hola, hola, boob boobs!
Yes, she sang hello to boob boobs for our entire walk to the park. They don't warn you about this stuff when they advocate breastfeeding!!
In Spanish class Kay is learning this song that basically goes, "Hola, hola, hola, (insert animal name here). It is then followed by a little sentence about that animal. For example, the duck waggles his bottom. Anyway, I was walking Kaylee to the park in her stroller yesterday (so we could crunch leaves) and she started singing her song. I loved listening to her little voice singing out for the world to hear until I realized she completely changed the lyrics...
Hola, hola, hola, boob boobs
hola, hola, hola, boob boobs!
Yes, she sang hello to boob boobs for our entire walk to the park. They don't warn you about this stuff when they advocate breastfeeding!!
Saturday, June 1, 2013
Our Start
The start of June will always make me think of the start of our journey together...
It was the last few moments of a Tuesday evening that brought you into the world. The day was so stifling hot that even the cool evening breeze couldn't calm it. The room was dim and quiet, your father and I silently waiting your arrival. Each time I felt my body tightening, squeezing, pushing you from your safe place in my womb, I pushed with every ounce of my being to bring you into my arms.
I remember the first moment I saw your face, the quick release that allowed you to peek out into this world you had only heard murmurs of from inside the womb. I remember that moment when you were between two worlds, that of the safety of my body and the giant one that lay before you. Your eyes were open, taking everything in, your mouth was open, already trying to call to me. It was mere seconds and yet in my mind that moment felt like hours. I turned to my husband, seeing him instantly transform from an ordinary man to a father. His eyes teared up and I saw the love he already felt for you.
With one more push the midwife had me reach my hands to you. I would be the first to hold you, meet you, love you. I pulled you to my chest and listened to the beautiful cries that sprang from your throat. You were instantly curious, looking to find my voice purring how beautiful you were and how much I loved you. You lifted your head to try to see my face. To meet this woman that had cared for you, talked to you, loved you, lived for you, for your entire existence.
The room was kept cool and yet there was the warmth of love surrounding the two of us. The warmth of our separate bodies, once joined, wrapped snugly around one another. The warmth of our breath, your very first breaths, on each other's skin. The warmth of my heart, which I once thought was full, spilling over with love for you: my heart, my soul, my life.
It was the quiet on that Tuesday evening that I was born too. My heart was changed, my mind was changed, my love was changed forever. My entire being had changed because at that moment, 11:13pm, I was reborn into a mother, into your mother. And for that I will forever be grateful.
It was the last few moments of a Tuesday evening that brought you into the world. The day was so stifling hot that even the cool evening breeze couldn't calm it. The room was dim and quiet, your father and I silently waiting your arrival. Each time I felt my body tightening, squeezing, pushing you from your safe place in my womb, I pushed with every ounce of my being to bring you into my arms.
I remember the first moment I saw your face, the quick release that allowed you to peek out into this world you had only heard murmurs of from inside the womb. I remember that moment when you were between two worlds, that of the safety of my body and the giant one that lay before you. Your eyes were open, taking everything in, your mouth was open, already trying to call to me. It was mere seconds and yet in my mind that moment felt like hours. I turned to my husband, seeing him instantly transform from an ordinary man to a father. His eyes teared up and I saw the love he already felt for you.
With one more push the midwife had me reach my hands to you. I would be the first to hold you, meet you, love you. I pulled you to my chest and listened to the beautiful cries that sprang from your throat. You were instantly curious, looking to find my voice purring how beautiful you were and how much I loved you. You lifted your head to try to see my face. To meet this woman that had cared for you, talked to you, loved you, lived for you, for your entire existence.
The room was kept cool and yet there was the warmth of love surrounding the two of us. The warmth of our separate bodies, once joined, wrapped snugly around one another. The warmth of our breath, your very first breaths, on each other's skin. The warmth of my heart, which I once thought was full, spilling over with love for you: my heart, my soul, my life.
It was the quiet on that Tuesday evening that I was born too. My heart was changed, my mind was changed, my love was changed forever. My entire being had changed because at that moment, 11:13pm, I was reborn into a mother, into your mother. And for that I will forever be grateful.
Wednesday, May 15, 2013
CF Awareness Month Blog- CF & Kids
Kaylee is only starting to talk and has a limited vocabulary, BUT she makes it clear that CF is already a big part of her life. I have 3 cute stories to share about CF and Kaylee.
- Whenever she sees my Albuterol puffer she holds it up to my mouth and then blows. I don't think she knows that I actually breath IN rather than blow out. It really is beyond cute, but kinda sad that she already knows what a puffer is.
- She thinks my nebs are the coolest thing around. Whenever I do treatments she wants to pull the neb from my mouth and suck on it too. I gave her a neb that only she can use and whenever she wants my neb I tell her to go get hers. She keeps it with all her toys and will walk over grab it and chew, suck, or make noises into her neb while I do my treatments. It is pretty darn cute. After having a past that CF was something we didn't talk about I am trying to normalize it and make sure I am open and available to Kaylee if she ever has questions about my treatments or CF.
- She performed CPT on me which I talk about here!
Sunday, May 12, 2013
11 Months
Dear Kaylee Marie,
You are 11 months old today! Only one more little month and you will be a whole year! I know it is probably because I am your mom (and I am sure all moms think this way), but I think you are the smartest baby on this entire plant! You have grown and changed so much I feel I need to write a novel, but I will try to just mention the highlights.
You have mastered WALKING, little one. What a big accomplishment and you absolutely love walking.You also try running sometimes. You have this game you play with Papi that he hides behind the corner and you walk down the hall. When you get close to him he jumps out and chases you. You turn around and run until you fall and crawl away, laughing the entire time. The only thing you love more than walking is dancing and baby girl, you have some amazing moves! You dance while sitting, standing, or squatting. you never miss any opportunity to dance!
You also love to let mommy have a turn. When I read you a book you have that has textured pages you like to hold my pointer finger in your hand and make me touch the texture so I can feel it too. When you eat or drink anything you like to hold it out so I can taste it. You like to turn off the light and sometimes you reach for my finger and make me turn off the light. You love to include me and I love that about you!
You are an amazing communicator and not just with words (more on that later). The other day you had your first big fall while walking. You were walking out of your room when you fell and bumped your head on the door frame. You cried, I snuggled you and all was well again. You then looked at me, walked to the door, pointed to it, squatted down and in slow motion gently bumped your head against the same spot you bumped it before. You then looked right at me and pointed to the door frame again as if to say, "that is what happened!"
Things You Like: Blowing on dandelions. In fact you love it so much that sometimes you try to blow other random flowers hoping the petals will blow away like the dandelion seeds. You love the palm trees in our front yard, seriously you just love them! You love airplanes and get excited and point to the sky whenever one goes by. You also love opening and closing your hand. You do this when saying, "bye bye", but you also like to do it when I sing a little song about opening and closing our hands.
Things You Dislike: You are a pretty easy going kid, but you absolutely are hitting that, "I do it" stage. You want to do everything yourself and get frustrated when you can't. You like to hold your own glass to drink water and you are pretty good at it, but then you want mommy's glass and if I say, "no" you get pretty upset at me because you want to do everything I do.
New Words: Oh, how you love to talk and you seem to learn words so quickly. Here are your newest words: no no (you make your mouth really tiny for this and you wag your little finger), do do (with a hard O) for pato (duck in Spanish), do do (with a soft O) for dog. You also know what sound a dog makes, "woof woof". You can say 11 words and you are only 11 months old! See, I may just be on to something with this smartest baby ever thing...
You are 11 months old today! Only one more little month and you will be a whole year! I know it is probably because I am your mom (and I am sure all moms think this way), but I think you are the smartest baby on this entire plant! You have grown and changed so much I feel I need to write a novel, but I will try to just mention the highlights.
You have mastered WALKING, little one. What a big accomplishment and you absolutely love walking.You also try running sometimes. You have this game you play with Papi that he hides behind the corner and you walk down the hall. When you get close to him he jumps out and chases you. You turn around and run until you fall and crawl away, laughing the entire time. The only thing you love more than walking is dancing and baby girl, you have some amazing moves! You dance while sitting, standing, or squatting. you never miss any opportunity to dance!
You also love to let mommy have a turn. When I read you a book you have that has textured pages you like to hold my pointer finger in your hand and make me touch the texture so I can feel it too. When you eat or drink anything you like to hold it out so I can taste it. You like to turn off the light and sometimes you reach for my finger and make me turn off the light. You love to include me and I love that about you!
You are an amazing communicator and not just with words (more on that later). The other day you had your first big fall while walking. You were walking out of your room when you fell and bumped your head on the door frame. You cried, I snuggled you and all was well again. You then looked at me, walked to the door, pointed to it, squatted down and in slow motion gently bumped your head against the same spot you bumped it before. You then looked right at me and pointed to the door frame again as if to say, "that is what happened!"
Things You Like: Blowing on dandelions. In fact you love it so much that sometimes you try to blow other random flowers hoping the petals will blow away like the dandelion seeds. You love the palm trees in our front yard, seriously you just love them! You love airplanes and get excited and point to the sky whenever one goes by. You also love opening and closing your hand. You do this when saying, "bye bye", but you also like to do it when I sing a little song about opening and closing our hands.
Things You Dislike: You are a pretty easy going kid, but you absolutely are hitting that, "I do it" stage. You want to do everything yourself and get frustrated when you can't. You like to hold your own glass to drink water and you are pretty good at it, but then you want mommy's glass and if I say, "no" you get pretty upset at me because you want to do everything I do.
New Words: Oh, how you love to talk and you seem to learn words so quickly. Here are your newest words: no no (you make your mouth really tiny for this and you wag your little finger), do do (with a hard O) for pato (duck in Spanish), do do (with a soft O) for dog. You also know what sound a dog makes, "woof woof". You can say 11 words and you are only 11 months old! See, I may just be on to something with this smartest baby ever thing...
Tuesday, May 7, 2013
CF Awareness Month Blog - Home Life
I am not in school anymore and since I had a late diagnosis I never had to deal with CF and elementary school. During junior high and high school I was really healthy and CF did not play a role in school at all for me. We never told any of my schools that I needed enzymes and I just carried them in my pocket (naughty naughty!) so CF really wasn't part of my school life at all. I decided to alter this topic (Can I do that?!?) and do a day in the life of a CF mom since CF plays a big role in my life as a mommy.
The schedule of a CF mommy to an almost 11 month old:
6:00am
- Wake up to a squeezable little face inches from mine cheerfully chanting, "hi!" until I open my eyes.
- I often lay around in bed for 20 minutes while Kaylee crawls all over me (I hate waking up).
- Get Kaylee and myself dressed and ready for the day.
- I do Albuterol because I just feel so much better when my lungs are open. Kaylee plays on the floor in the living room with me while I neb.
7:00am
- Make breakfast for both of us and we sit together to eat. Kaylee takes forever to eat (we do Baby Led Weaning) so I often sit and chit chat with her while she finishes.
- Clean up breakfast
- We go back to the living room where I do the rest of my treatments (Vest, HTS, Cayston) while she plays.
8:30am
- Sterilize nebs
- Play time with Kaylee- usually we listen to music (she knows how to turn on the cd player and she is pretty obsessed with dancing), puzzles, blocks, or she practices walking.
9:00am
- I use my juicer around this time and Kaylee "helps" me get the veggies out of the fridge. (In other words I open the fridge and she pulls all the condiments out of the door and scatters them all over the floor. It's actually easier to clean and prep while she plays with the bottle of mustard so I don't mind).
- I let Kaylee take some sips of juice (her favorite is kale, spinach, carrot, apple juice) and then I drink the rest and clean up.
9:30am
- Kaylee and I play in the garden. I weed, water, and tend to my plants while she stomps around in the mud, pinching dry clumps of soil with her fingers (she LOVES this), pulling leaves off my precious veggie plants (eek!), and running her fingers through the soil. We both love spending time in the garden and I think she would spend all day out there is she could.
10:30am
- Around this time Kaylee goes down for a nap. Depending on how I am feeling I nap too or I do housework (laundry, hanging clothes on the line, washing floors, the usual). I also do my next set of treatments- Albuterol, Pulmozyme, Cayston. If I am lucky I have 30 minutes or so of down time which is usually when I blog.
1:00pm
- Lunch time for both of us.
1:40pm
- After lunch is a little less structured. We either have go to a playgroup get together, go to music time at the library, play in the blow up pool, take a walk, run errands, etc
4:30pm
- I start making dinner.
- We all eat together (unless my hubby is at work)
- Clean up dinner
- I start treatments- Albuterol and HTS (if my hubby is home he hangs out with K while I do treatments, once a week my dad comes to hang out with her or she plays on the floor near me.
- Quiet play in Kaylee's room.
7:00pm
- Start bedtime routine for Kaylee
- Put Kaylee to bed
7:45pm
- Finish treatments
- Relax and go to bed!
*Of course this is approximate cause anyone who has ever been around a baby knows they aren't that great at time management!
**I also swim several times a week so those days look slightly different too.
Thursday, April 25, 2013
Finding Inspiration
When you become a parent you become a teacher. You spend those early days teaching baby to nurse, later you teach baby to sit up, eat on their own, later you teach them morals and what it means to be a good person and how to treat others. The teaching never ends. The amazing part, I am learning, is that your child teaches you just as much as you teach them. These past few weeks my daughter has been a huge inspiration to me to get back into shape.
These past few weeks my little one has decided that she really wants to learn to walk. She spends her days with arms stretched out to us so that we will take her hands and walk her around the house. If we fail to walk her long enough she practices walking along the couch or table. This little obsession of hers carries out in everything she does. We go to a weekly song circle where kids 0-3 listen, sing along and dance to Mr. C who sings and plays his guitar. Kaylee usually has a blast dancing (popping her little chest in and out which is an improvement from her old jumping dance style) and watching the older kids twirling around. Now that she has her eye on walking she could care less about Mr. C and her dancing friends. We spent the entire 30 minutes of music time pacing back and forth along the side of the room. There is no time for play when she has a goal in mind.
On April 23rd little Kaylee took her very first steps, walking from Papi's arms, taking wobbly independent steps only to land safely in my arms. My husband and I were cheering, I was squealing with excitement I thought I would burst with pride. And Kaylee? Oh, she was like, "Yeah, mom and dad, easy as pie!" I am pretty sure she was more proud of herself when she ate dirt in the garden the other day.
She has tasted freedom, independence, walking! But this little one is not satisfied. She continues to practice every waking hour. We brought her to the park yesterday (a warm 80 degree day, might I add) to swing on the swings, but Kaylee would have none of it. We had to walk all along the play structure four times and when it was time to go home she refused the stroller. Instead I held her hands as she walked herself as far home as she could go. Suddenly, her little legs gave out and she plopped on the ground. This little girl walked herself to exhaustion!
So here I am wanting to build my endurance, wanting to build my lung power, my strength Here I am trying to improve a skill I already do well(ish) which is significantly easier than learning a brand new skill (walking!). I make excuses in the morning as to why I don't really need to go to the gym only to find myself begrudgingly hopping into the pool to swim my slow motion laps. Then I come home to see my daughter giving all she has to walking, to learning a new skill and I think how I should be more like her. I should wake and tell myself that, no, I am not the best swimmer and in fact I have a long way to go, but I am going to give it my all! She inspires me to be my best, to do my best. Oh, I have so very much to learn from this little 10 month old!
These past few weeks my little one has decided that she really wants to learn to walk. She spends her days with arms stretched out to us so that we will take her hands and walk her around the house. If we fail to walk her long enough she practices walking along the couch or table. This little obsession of hers carries out in everything she does. We go to a weekly song circle where kids 0-3 listen, sing along and dance to Mr. C who sings and plays his guitar. Kaylee usually has a blast dancing (popping her little chest in and out which is an improvement from her old jumping dance style) and watching the older kids twirling around. Now that she has her eye on walking she could care less about Mr. C and her dancing friends. We spent the entire 30 minutes of music time pacing back and forth along the side of the room. There is no time for play when she has a goal in mind.
On April 23rd little Kaylee took her very first steps, walking from Papi's arms, taking wobbly independent steps only to land safely in my arms. My husband and I were cheering, I was squealing with excitement I thought I would burst with pride. And Kaylee? Oh, she was like, "Yeah, mom and dad, easy as pie!" I am pretty sure she was more proud of herself when she ate dirt in the garden the other day.
She has tasted freedom, independence, walking! But this little one is not satisfied. She continues to practice every waking hour. We brought her to the park yesterday (a warm 80 degree day, might I add) to swing on the swings, but Kaylee would have none of it. We had to walk all along the play structure four times and when it was time to go home she refused the stroller. Instead I held her hands as she walked herself as far home as she could go. Suddenly, her little legs gave out and she plopped on the ground. This little girl walked herself to exhaustion!
So here I am wanting to build my endurance, wanting to build my lung power, my strength Here I am trying to improve a skill I already do well(ish) which is significantly easier than learning a brand new skill (walking!). I make excuses in the morning as to why I don't really need to go to the gym only to find myself begrudgingly hopping into the pool to swim my slow motion laps. Then I come home to see my daughter giving all she has to walking, to learning a new skill and I think how I should be more like her. I should wake and tell myself that, no, I am not the best swimmer and in fact I have a long way to go, but I am going to give it my all! She inspires me to be my best, to do my best. Oh, I have so very much to learn from this little 10 month old!
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