As I pulled on my tennis shoes, I had lovely thoughts like, “I feel great today. The weather is perfect for a nice 3-mile run.” Or “I’m going to glide like a gazelle across the pavement.”
I gave my husband and the boys a quick wave, put on the headphones, and left. I started a fast walk as I fiddled with my iPhone: music on Pandora; tracking the workout with MapMyRun. And I ran.
As I began, my steps fell in sync with the music. “I could run forever,” I thought.
.25 mile later, my breathing started to get ragged. “Breathe in through the nose, out through the mouth. I can do this.”
Breathing under control, I turned onto a gravel road and faced nothing but fields and a farmhouse. My legs became heavy, tired. I focused on my arms, imagining they were parts of a machine, pumping and pulling me forward.
The farmhouse was on my right, a small house with several out-buildings. “Probably for storing equipment,” I thought. But I read a book recently about a family of country boys that were buying women and killing them, storing them in buildings just like those. I moved to the other side of the road.
Halfway up a small hill, my calves were on fire. “What happens if they burn right off my body?”
Then I heard, “Distance. One. Mile. Time. Ten. Minutes. And. Forty-Three. Seconds.”
“It’s only been a mile?” I tried to pick up the pace, but my legs didn’t seem willing. “I’ll just do 2.5 miles instead of three,”I thought. And then, “No. Three miles this time. I’m doin’ it.”
Finally, I reached the turn-around point. I paused the app, stretching my calves and catching my breath. A truck rolled slowly over the top of the hill. “Oh great, they’re going to stop and ask if I need help. I probably look like I’m dying.” The truck passed without pause. “Well I guess they’ve never heard of small town kindness. What if I were dying?”
I tapped the Resume button and started running again. “Halfway done. I can do this.”
My thoughts wandered until I heard, “Distance. Two. Miles. Time. Twenty-one. Minutes. And. Fifty-eight. Seconds.”
My calves started to burn again. I felt the back of my ankles tightening. “I can’t do this anymore,” I thought.
The next song started playing: “Die Young” by Ke$ha. I thought about my son. Cystic Fibrosis. Stories from adults with CF, swearing that running is what keeps them healthy. Ke$ha sang, “We’re gonna die young.” I fought back the tears. Pounded fear into the pavement. With each stride I thought, “Not if I can help it.”
When I crossed our driveway, I heard, “Distance. Three. Miles.” I shut it off.
I was finished. I did it. I will do it again. For myself. For my son.
My little guy is now 10 1/2 months old, and looking and acting more like a toddler everyday. He is standing for a few seconds on his own, walking while holding on to furniture, and climbing on everything his short little legs can pull up on. He can crawl across the living room and be halfway up the stairs in less than ten seconds!
His meals are also becoming much more toddler-like, in that we are avoiding purees as much as we can (sometimes those handy pouches like the Sprout or Happy Baby brands are convenient for on-the-go snacks!) and focusing on “real” foods. With this change, I have to repeat to myself almost daily, “I am not a short-order cook. I am not a short-order cook.” Sometimes it can be hard not to let his CF (cystic fibrosis for new readers) get the better of me. With CF, growth and maintaining a healthy weight can be difficult, but it is an important factor for good lung health. Also, once I give him his dose of enzymes (which he has to take before he eats, every time he eats or his body can not process the fat and protein), he only has an hour time frame to eat, and there is a limited amount of enzymes he can take in a day, so if he doesn’t eat well, then I have to wait at least a couple of hours before I can give him more enzymes to eat again. So for that reason, I struggle with the feeding choices. The part of me that is always concerned for his health wants to keep offering him things until I find something that he’s willing to eat. However as his dietician pointed out, doing that is teaching him to be in control of the food, which can lead to unhealthy habits. I know that this is true from experience: my now six-year-old only ate cereal, chicken, meatballs, corn, grapes, and snacks for the first four years of his life. Why? Because I would give in to his pickiness. If he wouldn’t eat the spaghetti and broccoli that we had for supper, I would make him his own separate meal of one of those things that I knew he would eat. Today, he’s a much healthier eater, but I wish I would have been persistent when he was younger about encouraging a variety of healthier foods for him. And so with my 10 month old, I am being persistent. I will give him a couple of options at snacks and 3-4 different foods for meals, and he eats what he eats. If it’s all or most of it, I feel good. If he barely touches it, I worry a bit about him gaining weight, but I don’t give in go through the fridge or pantry, shelling out food after food until I find something that he will eat. I does help me to know that I still nurse him or give some some formula after each meal, but the amount of that is slowly decreasing, and starting next month, we will begin transitioning him to whole milk! Stay tuned for next Munchkin Meals to see how that goes!
So, what does a day like this look like? I’ve taken a lot of pics to show you! (All from my phone, so I apologize about the poor quality. I’m definitely not a professional photographer!)
Breakfast: Whole wheat bagel with cream cheese and a banana. He ate about 1/4 of a large bagel and several bites of the banana, and then I nursed him.
Mid-Morning Snack: Chobani greek yogurt. He has one of these almost every day, because it’s so healthy for him and high in protein. He almost always eats the whole thing like he did with this one!
Lunch: Grilled cheese and avocado (such a yummy combination!) with strawberry slices and a few yogurt drops. He ate about a 1/4 of a full sandwich (and I finished the rest of it!) but barely tried the strawberry or yogurt drops. A pretty light lunch. Then I nursed him again.
Afternoon Snack: Honeydew melon, string cheese, and Annie’s Organic Bunnies cheddar crackers. This was his first time with the melon, but he usually likes the cheese and crackers. However, this particular time he was completely uninterested. I did give him a bottle, for his vitamins and salt intake, but only 4oz, because I do not want him to fill up on formula alone. After the bottle, he ate a couple of crackers, but most of this snack went untouched. (PS-I also realized after taking these pictures how messy our highchair cover was that day! Just keeping it real.)
Supper: I made Creamy Cauliflower Soup (a recipe shared by Allyson at Domestic Superhero, except we used “real” foods instead of the low-fat versions. We need the higher calories and fat for my little CFer!) and BLTs. He was hungry and crabby before the bacon was finished baking (Anyone else cook bacon in the oven?? So much easier!), so instead of the BLT, I made a slice of whole grain toast and spread some avocado on it. He ate his whole bowl of soup (probably 1/2 cup) plus several bites of the toast. I nursed him afterward, and then he was ready for bed! Being so active (and down to only two naps a day) wears him out!
Some days are better. Some days are worse. But I refuse to let the fears of CF run our kitchen. Nutrition with CF-specific supplements will run it instead. And starting while he is young is the key.
Thanks for reading today! Be sure to check out the other Munchkin Meals link-ups for more healthy meal and snack ideas for babies and toddlers!
It’s the first Thursday of the month, and that means I’m hooking up with Brittany at A Healthy Slice of Life for her Munchkin Meals linkup. If you’ve never read about Munchkin Meals, you really should click that link and check it out, especially if you have little eaters!
A proper CF diet is vital to my almost-seven-month-old’s growth and development, and I really want to get him off to a healthy start. We are still doing pureed fruits or baby cereal at breakfast, and we recently discovered that the baby boy loves avocado! He slurps that stuff right up. I mixed pureed avocado with pureed banana, and he ate a big bowl of it!
I’ve also started giving him small samplings of the foods that I eat throughout the day (as long as I’m eating during the one hour time frame when his enzymes are good!). I give him little pieces of the whole wheat bread from my sandwich or small bites of banana that he sucks off of my finger. He does really well with solid foods as long as it’s mushy. We discovered on Monday that even though he can hold a cracker and easily get it to his mouth, he still chokes on the pieces once he breaks them off. I don’t want him to have too many bad experiences that make him frustrated or scared of eating, so we will stay with the mushy foods for a bit longer!
Dinner has been a bit of a struggle lately. He was doing well with vegetables by themselves: carrots, sweet potatoes, squash, green beans, etc. However, per our dietitian’s request, we needed to start adding in the meats: ham, chicken, turkey, and beef. We have been using the Gerber brand with the meats and mixing it with homemade pureed veggies, but he doesn’t seem to like the meats at all. (Have you smelled those? They smell exactly like canned cat food. I’ve tasted them too. Bleh!) We are able to get him to eat them, but he definitely doesn’t enjoy it like he used to love the plain ol’ veggies. Sometimes it takes my husband, my older son, and myself all dancing and clapping and acting like complete weirdos to get him to eat without fussing about it. I have thought about making my own meats in a pureed form, but I’m not sure how to do that! Do I just cook the meats, add water, and blend it all in a food processor? I will most likely give it a try with some chicken soon to see if he will eat homemade meats better than store-bought. His body really needs that protein!
We will continue to work with him on the meat issue this month, and I hope that by the next Munchkin Meals, we will have better success! If you have any ideas or suggestions, I would LOVE to read them in the comments! Thank you!
Happy and healthy eats to you and your family! 🙂
After we got our son’s official diagnosis of having cystic fibrosis, I was angry. My tender and delicate three-week-old baby had been suddenly thrown into a lifetime of hospitals, treatments, and life-threatening possibilities. When I went onto Facebook to make the announcement of his diagnosis–because what kind of sleep-deprived, devastated parent wants to make that many phone calls?–I only felt worse. Seeing all of the status updates about the wonderful things happening in the lives of my friends and family was like rubbing the injustices of the world in my tear-filled eyes, and it burned. There were friends who announced their children’s healthy well-checkups. There were family members who were on vacation, relaxing on a beach with a drink in their hands, like they were never going to have a worry again. What really made me livid were some of the complaints.
“Traffic is terrible today!”
“Ugh, the house is a mess, but I don’t feel like cleaning. Anyone want to do it for me?”
“I’m so hungry! Is it lunchtime yet?”
“Some people are so frustrating! Can’t wait for this day to be over.”
In that moment, those complaints seemed so insignificant and petty. I wanted to scream, “Really? That’s what you’re complaining about?” While these people’s biggest worry of the day was whether or not they were going to have time to stop at Starbucks on the way to work, I had real problems. I had a baby with a life-expectancy of 38. I had to endure the blood tests, the long doctor’s visits, and sorting out the confusing details of a complicated disease. Real problems, people.
I was angry with the world.
But then I thought about it from my son’s perspective. Despite the disease that had manifested inside of him, he was still a beautiful and innocent newborn. He cried and nursed and pooped and slept just like any baby should. He was content with the world. The last thing I wanted was for him to feel angry. After all, it was his body that was affected by this disease. It was his life that was imposed upon, and no matter how much it affected me, it would always affect him more. I couldn’t let him grow up thinking that he had a reason to be angry. I didn’t want him to believe that anyone else had a better life than he did. Or was more normal. Or was luckier. Or was more blessed. Something in me shifted when I looked at my sweet baby boy and saw the kind of man he needed to be: healthy, strong, and determined. I let go of the anger as best as I could, so that I could see my son as the perfect, tiny being that he was. I was grateful for him, and my Facebook status probably would have read, “I am such a blessed mama.”
Six months later, what do I complain about? I complain about the half hour wait at the doctor’s office. The never-ending piles of laundry and dishes. The grocery store being out of Cherry Pepsi. And somewhere out there, someone may overhear my complaints who is tackling something big. Something real. Something difficult. They may feel angry at my complaints. Just give them some time and perspective, and their complaints will be as good as mine.
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When I’m alone, or with my immediate family, or with very close (and equally silly) friends, I can be myself. But I am reserved and downright shy when out of my comfort zone. I like to blend in amongst a crowd of strangers. And it seems as if my son has inherited this shyness from me. Even with people that he knows, he sometimes struggles with answering the simplest of questions.
When my son won a recent art contest, we received admittance to a black tie gala benefitting the Cystic Fibrosis Foundation. At first, I was ecstatic. As I rattled off all of the details to my husband, it felt like we were Cinderella and family.
The elation lasted until reality set in. My husband didn’t own a black suit. I didn’t own a formal gown. My children had only “church clothes” at best: khakis and polo shirts. When checking the website for confirmation of appropriate attire, I noticed that the gala was attended by the city’s “most prominent professional and social leaders.” My throat constricted. Our living room got hotter. I wasn’t sure we could do this.
The next day, I got a message on Facebook from a friend. She asked about the gala and asked if we would definitely be attending. Nervously, I confirmed that we would be there, and she didn’t hesitate to purchase tickets for her family to attend. They were familiar with black tie events. They had the attire. They knew how the evening would proceed. They had the financial resources. They would be at our table, at our sides, giving us the support we would need.
So I dug through our closets. I had shoes from our wedding. My husband had pants, a dress shirt, and a tie. My oldest son had black dress shoes. My youngest son had a tie. I borrowed a dress and jewelry from my mother-in-law. And thanks to a good sale at Kohl’s, we were able to purchase what we lacked. I knew we weren’t going to be on the best-dressed list, but I hoped that we would blend in enough to satisfy my comfort zone.
When we arrived to the event, there were men in tuxedos and snappy black suits. There were women in flowing, sparkling gowns. And yet, I didn’t feel out of place. Our boys got a lot of attention. Men and women alike were giving my oldest son high-fives and making comments on how handsome he looked. Our baby boy got lots of “awws” in his Mickey Mouse hand-me-down tie. I started to feel at ease. Like we were supposed to be there, and like we were catching a glimpse at how the other half lives at the same time.
As we sat at the table for dinner, our children joked and laughed. My friend asked our son if he had prepared a speech for when he goes on stage to talk about his artwork. And suddenly, all of my panicking returned. I had been so worried about our appearances and blending in, that I had failed to help my son, the only one of us who was truly going to be on display.
“We’ll just wing it,” I said, nodding confidently at my son, despite all of the “you’re a terrible mother!” alarms going off in my head.
My friend offered my son her expertise. “You need to get up there and say, ‘I made this artwork to help my brother who has CF. It’s worth MILLIONS. I need you to open your pocketbooks, and DIG AS DEEP AS YOU POSSIBLY CAN.”
We all laughed. It was a great speech, and I was kicking myself for not thinking of something so clever to help him.
When the MC called my son to the stage, he jumped out of his seat and marched straight to the stage. He was on a mission. I could see a twinge of nervousness in his face, but there was enough determination there that I knew he was going to do it. He was going to stand in front of all of those well-dressed people and speak. I stood next to the stage with my husband, holding our baby boy in my arms. My son climbed up the step stool at the podium. From the front, one could see only his little blue eyes and forehead. The MC asked him to step down and stand next to his artwork instead. He asked my son to tell everyone a little bit about his artwork. My son was quiet. Although I could see him collecting his thoughts, none of them were making their way out.
“Dig deep!” my friend whispered loudly from the audience.
My son looked at her. Then he looked over at us. And then quietly but clearly he said, “My brother painted the green grass, and then I drew the flowers and painted them. And that’s all I remember.” Everyone chuckled at his cuteness. It was the perfect speech. Not rehearsed, not embellished. A simple response that was all his own.
The auctioneer started the bidding, and he was quickly on a roll. My son watched as the hands went up around the room. $500. $550. $600. $700. $800. $900.
“I should keep you up here all night!” the auctioneer said to my son.
My son replied, “I don’t know if I could stay up here all night. I might get tired.”
More chuckles from the crowd. $1,000. $1,100. $1,200. Going once. Going twice. My son’s artwork was sold to a gentleman in the front for $1,200.
Now that everything is back to normal in our cozy little home, there are no more anxieties. I left all of those at the gala, and I returned home with more pride in my son than I’ve ever felt, more thankfulness in the generosity of people like our friends, and an internal acknowledgement that my six-year-old son was braver that night than I have ever been.
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I’m linking up today (and the first Thursday of every month!) with Brittany at A Healthy Slice of Life for her Munchkin Meals! It’s so nice as a mom looking for adventurous, nutritious new foods to introduce to my little guy to have this as a resource every month. I’m always so impressed by the healthy meals that other mamas are creating for their babies! Take a look, and you’ll see what I mean!
The last time I posted Munchkin Meals, we were just starting our little guy (almost six months old now!) on some foods. He has taken to it so well, and we’ve tried several of the basic foods, and are starting to become a little more adventurous.
We typically start out the day with either rice cereal or a fruit. We have a gorgeous, HUGE pear tree in our backyard, that has produced more fruit this year than we can consume, and our little guy just loves it! Both our pears and our apples this year were just the juiciest pieces of fruit ever! And I love the homegrown appeal too.
We aren’t doing a lunchtime feeding yet, but we have started doing two meals a day, so he has dinner. He has mostly been getting either a fruit (if he didn’t get one for breakfast) or a vegetable for dinner. I made a pear-pumpkin combo that he really liked! But yesterday we tried something new: quinoa! He did so good with it, even though I didn’t puree it. I am impressed with this little guy’s eating skills.
I think he does so well with the chewing, because he has been taking his enzymes on a spoonful of applesauce since he was three weeks old. He has to take these before every feeding, breastmilk or foods, so I always nurse him after each feeding (and for a total of seven times each day) to make the most of these enzymes! Thank God for health insurance, because these little suckers are expensive!
We have also introduced a sippy cup with water, and he can drink from it like a pro too!
So far, feeding our little guy has actually made things a bit easier than made any new challenges. Now that he is eating foods, we put his daily amount of salt mixed in with whatever he is eating instead of having to make a two ounce breastmilk or formula bottle to put the salt in. Not having to pump and make a bottle has made things much easier in that aspect of his needs. However, I think the biggest challenge we will face with our little one’s diet is getting all of the high-calorie, high-fat, and high-protein in each and every day. It’s so important for his growth. I grew up in a home where my father was a diabetic, and therefore, we always had low-cal, low-fat, low-sugar diets, so this CF diet is a completely different way of thinking about food for me. It’s going to be tough at times to prepare foods, especially as he grows and starts to eat what we eat as a family, that have the full fat for him, but yet a normal diet for the rest of the family. But with everything else, it’s a learning process, and we have a great dietician at his CF clinic that I know will help us along the way! And thanks to Munchkin Meals, I find tips from other moms for foods that are naturally high in these things that our little one needs to give him the healthiest start possible!
Thanks for reading! Any suggestions would be so appreciated! 🙂
The past two weeks have been a whirlwind of fun, adventure, and feeling overwhelmingly busy (yes, even for a stay-at-home mom!), so I haven’t had a chance to post much lately. I wanted to give you all a glimpse of what our little family has going on to help you all catch up! I’ll do it mostly through pictures, because… well, it’s just cuter that way.
We had Halloween last Wednesday, which was a success in my eyes, because we got our oldest son to go to more than four houses this year (it was the smallest, saddest little bag of Halloween candy I’d ever seen last year). While I don’t normally condone my son talking to strangers, I do see Halloween as an opportunity to be social to our neighbors, to get a little glimpse into their homes as they welcome you at their door. It’s a night of trust when there seems to be less and less of that in our communities. And I’m happy to be a part of it. Plus, my boys looked pretty darn cute this year.
Two days after Halloween, we celebrated my five-year-old becoming a SIX-year-old! We had a nice little party at home for him on his birthday last Friday, and then we spent the next day at Dave and Buster’s restaurant and at the movies seeing Wreck-It-Ralph with our family. He had a BLAST. I feel so blessed that this smart, funny, sweet little boy made me a mom six years ago.
This week, we are preparing for an event of a lifetime. We got a call last week letting us know that my boys who had entered an art contest for the local chapter of the CF Foundation had WON the contest!! The prize was tickets for our family to attend the big black tie gala, benefitting the CFF! We are getting dressed in our best this Friday night, and we will not only be attending the gala with cocktails, a seated dinner, and live music and dancing, but we will get to go on stage while they auction off my boys’ artwork for the charity! It is such an honor, and we are all super excited about it. A family who is near and dear to our hearts not only purchased tickets for their family to attend the gala with us, but they rented us a night’s stay in the hotel where the gala is being held! My sister-in-law has also graciously agreed to come to the hotel and watch our boys for us after the event, so that my husband and I can enjoy the after-party with our dear friends. We are so blessed. This is truly going to be a night to remember, all because of my two very special boys.
Phew! So much going on, and with the holidays approaching, things just keep getting busier! I try to take a minute or two every day to “catch up,” be thankful, and just breathe. I hope you are able to do the same. 🙂