Open Letter To Friends With Babies

Dear Mommy Friends,

My daughter is approaching 5 months and to the shock and confusion of many of you my sweet daughter has never left my sight for more than 30 minutes while awake, she has never had a bottle, and has slept in my bed from the day I brought her home. My kind hearted friends, you try to tell me that I should teach Kaylee to drink from bottles so my husband can do some feedings. "You need alone time," "You could sleep while your husband does a feeding", "You could have your mom watch her for a few hours," some of you say. Many of you don't understand why I choose to bedshare. "Isn't it harder to sleep?" "Doesn't she wake more often?" Don't you want her to sleep through the night?" Many of you ask. You don't understand my lack of need for alone time, you don't understand why I feel no need to rush my daughter into being independent.

This is what you don't know my dear friends. When you spend your life believing that your biggest dream is completely and utterly unattainable and somehow magically that dream comes true, you never ever want to let it go. You spend every morning in awe that you achieved the impossible and you don't want to miss one second of living out your dreams.  I know many of you have wanted children your whole life and some of you struggled to conceive so you may have some idea why I feel the way I do. And yet it is so much more complicated than that. I know I was able to achieve my lifelong dream and I wake up everyday beyond grateful to have my daughter, but unlike you my friends, who still feel as if death is so far from reality that it never crosses your mind. I know that I stand much closer to my own demise than I would like.

I know I will likely leave my precious daughter much before either of us is ready. I know there is a chance I will miss her high school graduation, college graduation, her wedding day, her children. I want to spend as much time with her as I can while I am still healthy and very much alive. I want to ensure that my love is ingrained in her soul so that even though she will not remember these days she will remember the way I made her feel. I don't want my husband to give her a bottle even during the wee hours of the morning. I would rather her lay in my arms, feeling the softness of my skin against her skin, breathing the soft scent of my milk, my sleepiness. I want her to feel my hands stroking her hair and I want her drift to sleep to the sound of my heart. She will not remember nursing, but I hope when I pass she will still feel the warmth, love, and nourishment my body provided her. I don't want to go out shopping for the day while she stays with someone else. I want to laugh with her as she plays with her toys and makes her silly faces. I hope when I am gone she will remember the melody that the two of us made when we laughed together. I don't want to transition her to her crib, I would rather sleep with her in my bed,wrapped in my arms, dreaming side by side. I hope when she is older and I am gone she will feel the comfort my arms once provided her as she drifts off to sleep all the way until the sun comes up in the morning.

So dear friends, I know you have my best interest in my mind. I know you are looking out for me and want me to be happy. But you must understand that my daughter makes me happy and I know in my heart that what I am doing is what will bring me the most joy and peace in my life. I do not judge your shopping days away from baby, your alone time, date nights or that you are working hard to make sure baby doesn't disturb your sleep in the night, but our realities are so drastically different. And I appreciate your suggestions, but I don't feel like I am missing out on anything I will regret when my lungs give out and my body can no longer hold the little girl I spent my whole life waiting for.

You Just Can't Understand

Around the time I joined the mommy club many of my friends were joining too. We are all entering this new uncharted territory together and it is amazing to have old friends starting their journey as moms at the same time. Soon after I announced my pregnancy a few close friends that live by announced theirs as well. I was elated; how exciting to take walks together, to exchange our favorite brand of breast pads, to empathize with sleepless nights, to watch our babies interact, and experience one of life's greatest joys together. And yet...

It has become so apparent that my life is so vastly different than these dear friend's lives. When we were single we seemed very similar and even with the changes of marriage and pregnancy we seemed so much the same. We had similar careers and hobbies. You would think experiencing motherhood together would make it seem as if we could completely relate to one another and yet, we can't. 

It became apparent when I went to visit a dear friend and her 2 week old son. Kaylee was 3.5 months old and I was the veteran mom of the two of us. I went to help my new mom friend as we all know the weeks after a new baby are a fuzzy blur of awe, sleeplessness, confusion, and intense love. I said I would be there around 11:30. I spent the entire morning rushing around trying to get to her house on time. Between bathing the baby, myself, an hour of treatments that were interrupted by a much needed nap, trying to eat breakfast and later a snack, I made it to her house just a few minutes late. 

When I arrived she opened the door showered and with make-up on. Her house was completely spotless and she looked well rested. I was a little taken aback because when I had a two week old I remember being tired, the house being a mess, and showers were no longer the daily norm. "How are you doing?" I asked. She responded that she was doing great and that they had spent the morning in bed. In fact, she had just gotten up about 30 minutes prior to our arrival. There was a buzz from down the hall and she ran to get a load of laundry. I am pretty sure my jaw  and heart dropped at this point.

I felt like a failure. It had taken me all morning to get out of the house. My home was cluttered and I had a pile of laundry that needed to be done days ago. I should have my act together, I should be the one helping a poor new mom adjust to the demands of a new baby and yet I felt as if I might need her to come and help me out! Oh, my self esteem went down a few notches that day. And yet...

As I thought more about the stark contrast between the two of us later that evening I came to a few realizations. As a person with CF I will never be able to compare myself to nonCFer. And just as I will never measure up to someone that didn't have CF, someone without CF will never understand what it is like to be a CF mom. Here are some of the many reasons I should never compare myself to a non-CF mom:

• I will never be able to get up 30 minutes before someone's arrival because I have at least an hour of treatments to get done not to mention shower, dress, eat, and get the baby ready. So when someone shows up I may not look very rested because I have been up for hours getting ready for the day.
• I spend 2.5 hours a day hooked up to machines and coughing. Other women can spend this time cleaning, baking, or making themselves look pretty. Unless I want to ignore my child all day I will never have as much time to tidy up the house or myself as my nonCF counterparts.
• I may be a little extra tired because my body is already working harder just to breath so that lack of sleep and those night wakings are even harder on my body than that of a healthy mom.
• I need to eat and I need to eat a lot! Being a breastfeeding CFer means I need a lot of calories and so it may be okay for a nonCF mom to skip a meal here and there it just can't happen when you have CF.
• My life will never be like theirs. Like, motherhood my health is a full time job and I never get a day off or a vacation.

I need to change my attitude and look at how well I am doing as a CF mother. I need to remember that I am not the normal stay at home mom, but one that has a chronic condition that requires lots of time and energy. I need to be proud of myself and all I have been able to do despite CF. And yet, it is so hard on days like today, when I am still catching up on laundry, have yet to get dinner started, and need to run the dishwasher so I can load it with the dishes in the sink, to get a phone call from my fellow stay at home mom (of a 1 month old) saying she has been baking all day and wanted to drop off some baked goods. Sigh!

I Need Your Help

So I think the time has finally arrived that I need to call in backup. I hate to admit, after 13 months free of oral antibiotics and almost 3 (3!!!!!!) years free of IV antibiotics, that I am feeling my lungs slip into that place we all know too well. I feel tight (wheeze!) and am coughing at night (ugh!) and seem to taste my sputum (yuck!). I really want to treat this as soon as possible because I don't want to get to the place that I feel really bad and have trouble caring for my daughter. I still feel well enough that I don't need to nap and can get through the day, but I can tell that the rate I am going that I will be in trouble soon.

Normally I would call in an order for orals, but my doc made it pretty clear that when breastfeeding there were very few safe oral options and I would most likely need a PICC. Not so excited about getting a PICC since I am allergic to chloroprep, and pretty much every adhesive they have ever tried to use. That skin protective stuff, yeah, doesn't work for me. I end up with oozing yucky blisters that take months to completely heal. I am also not looking forward to having a long blue rope hanging out of my arm and dangling in arms reach of my daughter, who thinks everything is food! So here is where I need your help!

1. I am calling the doc tomorrow and want to know if any of you have taken orals while nursing for pseudo or staph. I am not allergic or resistant to anything and those are my only bugs. I am not willing to stop nursing so if there aren't any safe ones I will go for the PICC.
2. If you have had a reaction to PICC lines (which I know from my last post about it many of you do) what have you done about it. I know I am highly allergic to chloroprep and have yet to find an adhesive I am not allergic to. Any suggestions or things that worked for you?

Thanks :)

A New Low

Motherhood is not glamorous by any means, but today I hit an all time low. I was lifting Kaylee over my head making her smile her sweet gummy smiles when all of the sudden a flood of spit up came flowing right from my dear baby's mouth and directly into my mouth! Breast milk is surprisingly sweet, but I have confirmed today that regurgitated breast milk  really isn't my drink of choice....

A Little Behind

Lots of my blogger friends have been blogging about Autumn. The crisp cool air, leaves changing colors and falling from trees, of warm drinks, and snuggly sweaters. While the rest of the country is welcoming fall we are stuck in limbo. This happens every year, the rest of the country starts to see the bright oranges, fiery reds, glowing yellows while we are just seeing the first glimpses of a potential fall. As the rest of the world gets blanketed in cold winds and winter weather we finally find ourselves in fall. I guess we have trouble letting go of the warmth and sunshine over here.

Our fruit basket is full of all my favorite fall fruits from my parent's backyard, the pumpkins are lined up out front, apple cider is in the fridge, and pumpkin muffins in the over. And yet, there is a watermelon chilling in our fridge, people still in shorts (although some have switched to jeans a tank tops), walks are taken in the evening when the temperature drops and the leaves have just barely, ever so slightly, started changing colors. 

So for now we wait by eating our last few meals outside, rocking on our porch glider in the evening to the sound of crickets, and leaving the windows open to let in fresh air before we close down for winter. 

A Little Busy

So I have about seven blog posts started that are waiting to be published. I am having trouble finishing them because I have been spending my time listening to baby giggles, snuggling on the cough, kissing little toes, bathing a little splasher, doing loads of laundry, cleaning spit up off the floor, taking hundreds of pictures and just as many videos, wiping drool off my arms, pulling my hair out of little fists, acting as a human chew toy and watching my little girl grow and learn. Best. Job. Ever.

4 Months Old!!!!!!

Dear Little Peanut,
You are four months old today! I have to say in the last month you have become so much fun I can't stand it! My soft spoken sweet little girl is learning she has vocal cords and loves to play with volume when you talk. You love to talk, but are still selective in who you will talk to. Strangers will get a smile, but you never grace them with your chit chat. You roll both ways, but you get kinda mad when you roll on your back because you really dislike laying on your back staring at the ceiling. You grab just about everything and try to eat it.


Things You Love: All the things you adored in the past are now boring and old! You sometimes will glance at your pom poms, but during diaper changes you are usually too busy sucking on your toes. You may glance at your mobile, but you are usually too busy rolling over or pulling off your socks to notice it much. And fanny, well Fanny doesn't even exist in your world anymore. You love looking at the leaves on trees, watching me from your high chair in the kitchen, and watching us brush our teeth! Oh and the carseat you used to hate so much now doesn't bother you at all. Instead you play with your toys or talk to yourself and it is hard to believe, but sometimes you even fall asleep!

Things You Dislike: Oh and the carseat you used to hate so much now doesn't bother you nearly as much anymore. Instead you play with your toys or talk to yourself and it is hard to believe, but sometimes just sometimes you even fall asleep!